ADR UK podcast - Connecting Society: How everyday data shapes our lives

Administrative data is about real people and their lives. So in the first episode of Connecting Society, we’re diving into the big picture behind the vision of ADR UK (Administrative Data Research UK): why does using administrative data for public good research matter? How can it make a meaningful difference to society? And is your data being stored and used securely?

Joining us to unpack these questions are Dr Emma Gordon, ADR UK’s Director, and Ally McAlpine, the Scottish Government’s Chief Statistician and Co-Director of ADR Scotland.

This episode explores the state of the data landscape before ADR UK’s work began, the goals we’re moving towards, and the benefits this work brings to the public. Our guests will also share their personal career journeys, what motivates them, and why they believe this work is so important.

 

Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

Read an article from Emma which provides more information on the background of ADR UK: https://www.globalgovernmentforum.com/to-change-the-outcome-of-a-process-you-have-to-be-prepared-to-change-the-system-five-minutes-with-public-service-data-live-speaker-administrative-data-research-uk-director-emma-go/. 

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Shayda: In this podcast, we are exploring all the different ways in which the information that is collected about our everyday lives—from interactions with health services, voting behaviours, police and crime reporting, educational achievements, and more—is used by researchers and policymakers to make better decisions, support society, and make the world a better place.

Mark: Well, this is very exciting. Our first episode. I'm a bit nervous. How are you feeling?

Shayda: I'm an avid podcast listener. It's interesting to be on this end of the mic, though. How have you been preparing for today?

Mark: Well, I did a sit-up because I thought that might be useful, but you never know.

So Connecting Society. That's our snazzy title. I was a bit disappointed that some of my names were rejected, though: Data Data—you know, like day to day but with "data" shoehorned in—Behind the Data, Seize the Data, and my personal favourite, Admin-mazing Data.

Shayda: Admin-mazing Data. Wow. I'd expect nothing less from someone whose day job is to actually analyse data. Mark, you're our resident data scientist. Can you give us a quick definition of what administrative data even is?

Mark: Gosh! You're starting me with the hard ones there, aren't you?

For me, administrative data is the information that is generated every day when people interact with public services—schools, courts, welfare, or even the NHS. All these interactions are recorded by the government.

While these public bodies keep such information to help the way their service runs, this information can also help researchers find valuable insights about society and identify where change might be needed.

For example, the NHS records all diagnoses of diabetes so that it can know who needs help and plan for investment in treatments and medicines. By knowing how many people have diabetes, we can start to look at the patterns of which demographic characteristics or social groups have more cases of diabetes than others. This helps us identify what might be causing diabetes to occur and better target our responses to prevent it.

Shayda, this is your first role in the data space. Did you know anything about administrative data before joining ADR UK?

Shayda: No, to be honest, I never imagined that the words administrative data would involve anything exciting.

But the research is so interesting, as our listeners will find out as they continue with the series. I joined ADR UK five years ago and never looked back.

How about you, Mark? When did you first come across administrative data, and how was it different from the other types of data you worked with previously?

Mark: Well, I started my PhD using mortality records, so, you know, I'm an OG admin data person.

I think for me, what excites me the most is the size and detail of what you can get from administrative data.

For researchers, if we set up an experiment or collect a survey, we only ever get a snapshot into the lives of people. Administrative data allows us to see how society behaves at a large scale. It gives us more granular insights to help us make much better decisions.

Shayda: We could talk about this all day, but let’s get on to today’s podcast, where we’ll introduce the big picture behind ADR UK’s mission. Why should people care about the use of admin data? How can it make a real-world difference to society? 

We’ll talk about how the system worked before, what ADR UK is doing differently, and what this means for you, the listener.

Mark: And to help us do that, we have two admin-mazing guests with us today—Emma Gordon and Ally McAlpine. Welcome to the show!

Emma: Hi, great to be here.

Ally: Thank you.

Shayda: Can you please tell us a little bit about you, where you're from and what you do? But very importantly, we have one rule for this podcast, which is no technical jargon. Emma we'll start with you.

Emma: Thanks very much, Shayda. And yeah, I'm the Director of the Admin Data Research UK programme, like you said. And my role is basically a big coordination role. And so it's talking to data owners within government about how we could work with them. It's talking to researchers about the outputs from their research, and it's generally making things happen and really championing what we're doing. And so I speak at a lot of conferences and public events and I'm really, really passionate about what we're doing.

Shayda: Amazing. Ally?

Ally: So I'm Ally McAlpine, I work at the Scottish Government and I'm Chief Statistician. Now if that job's not big enough, I'm also Co-Director of ADR Scotland. So that's part of the ADR UK family. And I guess the best way to describe my job when I'm working with administrative data is trying to link that research to the policy needs that we've got coming up in the Scottish Government.

Shayda: Incredible.

Mark: OK, we're going to get the most important questions straight out of the way first. So we're going to ask you both to respond to a series of questions. Starting off, is it day-ta or dah-ta?

Emma: Most definitely, day-ta.

Shayda: What about the choice between a pie chart and a fruit pie?

Emma: Every day, during my time when I was working at ONS it drilled into me how bad pie charts were at representing data. 

Ally: I totally agree. I would get rid of pie charts altogether. 

Shayda: Let's make a motion to swap all pie charts for fruit pies.

Mark: What's your favourite statistic, Emma? Do you wanna go first?

Emma: I was really struck by a statistic from a recent report published by one of our researchers that was 33% of care-experienced children received a youth justice, caution or conviction compared to 4% of those without care experience.

And I didn't know that before. I bet there's a lot of people that didn't know that before. And even if we had an inkling about that that was the case, we wouldn't have known how great that risk was for these children. And we do know that now. So now governments and policymakers can think about how to change that situation and how important it is for those individuals as well as society for improving the lives of those people.

Mark: That's a good one. I saw that recently and I was quite intrigued by the whole thing. It's fascinating. Ally, do you have a favourite statistic?

Ally: So here's my favourite statistic, 58% of new manure is kept in heaps and is not covered. And you think, well, that's quite, why am I interested in manure and 58%? But the link there is that manure left uncovered is actually quite a big greenhouse gas emitter and contributes quite a lot to the UK's emissions for methane. And while it's losing all of that gas, it's actually losing its nutritional value as well.

So there's some statistics that first of all help mitigate climate change, but there's a cost attached to doing that as well. That's my favourite at the moment.

Mark: Excellent. I never thought we'd get into manure in this podcast, but you know, here we go.

Shayda: Before we jump into learning more about both of you, I'd like to start with the top line. So if listeners could take one thing away from this podcast, what would it be? Emma, you first.

Emma: For me, I've been passionate about data for a very long time, but it's only recently that it's really dawned on me the value of what we're doing to society. And that's because usually social and economic researchers are basing their research on survey data. And obviously, survey data is absolutely brilliant, but it's only ever as good as the people who answer surveys. And we've known for a very long time that there is really important sections of society that generally don't answer surveys and therefore aren't represented in the data.

And quite often these are the people who can have quite chaotic lives for various reasons through no fault of their own. But it's generally the most vulnerable people in society. And that's really, really important in terms of research and policymaking because we need to understand who those people are, not least so that we can improve the lives of those individuals, but also so that we can reduce the cost of services and the cost of services that need to speak to each other and for these people. 

And we generally think of people in terms of how they access individual services. So you're either a pupil or a pensioner, or a patient or a prisoner, but what if you're one or more more than one of these things? And what if you're all of these things? And suddenly your life becomes quite challenging in terms of how all these services are interacting or not interacting and not speaking to each other. And that has a really high cost burden to society in terms of those services not working efficiently because they're not dealing with the individual at the centre of that maelstrom of decisions that need to be taken about that person.

And so it's really dawned on me quite recently that linked administrative data gives you a view about who these vulnerable people are in society much, much better than any other form of data. And therefore the people that have been really missed from discussions in policymaking and research findings as suddenly we can drill down, we can find those things. So it's inexcusable now not to consider these people within policymaking.

Shayda: Yeah, I really like what you have to say about how administrative data can capture multiple identities and experiences of people. I think this is also what interested me in it too. Is that because when you link together the data sets from different departments, so for instance, education with health or education with crime or education with health and crime, you are getting a sort of more like well-rounded view of the sort of experience rather than and kind of a sort of population experience rather than a small number of people who have been designed to represent the experiences of a larger number of people.

Emma: Yeah, exactly. 

Shayda: Ally, if there's one thing our listeners could take from this podcast, what would it be?

Ally: I think what Emma just said makes a lot of sense. And I think for me as Chief Statistician, what I'm trying to do is make sure that evidence is embedded within anything that we're trying to deliver within Scottish Government or anywhere else in the public sector as well. And effectively, the work that we're doing is spending taxpayer money. So we need to be as efficient as we possibly can be. And I think that's where data helps.

And certainly, you know, you could look at statistics across the whole of Scotland, notice a problem, put a policy in place. But I think what Emma is talking about there, you know, around about linking the data, that gives us even more evidence. And it makes sure that when we're when we're trying to put out a policy that's actually reaches the parts of society that will benefit most from it. The flip side to that, further down the line, is that we can then evaluate whether it worked or if it benefited the parts of society we hoped it would.

Shayda: You're right—we are financially investing in these services through our taxes. By using data that better represents the population, we can make decisions based on evidence that includes people who engage with society. I suppose that makes sense to me.

Now that we've gotten the serious questions out of the way, let's get to know you both a bit more. Emma, let’s start with you. You used to work at the Bacardi Bat Sanctuary, which sounds very exciting. How did you go from there to being the Director of ADR UK?

Emma: I ended up going to university, picking my favourite subject at school, and then studying that as a degree. My favourite subject was biology—I loved animals—so I did zoology at university. I really wanted to do a PhD, and to do a PhD in zoology, you need fieldwork and experimental experience. I volunteered to get involved in other people's research studies. That’s how I ended up helping with a research study based at the Bacardi Bat Institute in Gainesville, Florida, which worked on megabats—absolutely giant fruit bats. I also got involved in research on bats in Costa Rica, which was absolutely fascinating.

From there, I did a PhD in bird flight. During my PhD, I had my daughter, and I was eight months pregnant with my son when I had my viva. It was really interesting going back to work after completing my PhD. I felt strongly that if I was going to leave my kids with someone else, it had to be to do something really meaningful. Although my PhD research was intellectually interesting and energising, I didn’t feel it had a broader purpose for society.

Long story short, after many random jobs and roles at universities, I did a part-time master’s in public health, nutrition, and physical activity. From there, I transitioned from being a zoologist trained to study animal systems to being an epidemiologist trained to study human population systems. I worked on a fantastic postdoc involving a longitudinal study based in Bristol. This study examined how children grow up and the impact of factors like family environment, diet, and health on their lives. 

From there, I went to work at the Office for National Statistics, where I eventually became Head of Health Analysis. My favourite part of the job was interacting with researchers who wanted to use data for research. I came to understand all the barriers they faced as gatekeepers of that data. Now, I’m in the amazing position of being part of the solution—supporting the government in finding ways to engage with academics, granting them secure access to data, and enabling researchers to contribute to policymaking decisions and discussions.

Shayda: Incredible. Ally, Were you once a chef in a previous life?

Ally: Oh, someone has told you stories! Yes, I was a chef, though not a very good one. I describe myself as a “Poundland Gordon Ramsay” and probably wasn’t even that. I worked in bars and restaurants. Before that, I went to university to study chemistry—it was the only subject I was good at in school, or at least the only one I thought I was good at. But I ended up dropping out in my third year. The only course I passed that year was on quantum chemistry, which was essentially statistics.
 
So after my stint in cheffing, I decided I needed to go back to university. I studied maths and economics and then landed a job working for the police in Scotland. At the time, it didn’t seem like a dream job, but it turned out to be one of the best I’ve ever had. It was amazing to see how incoming data could influence how policing was carried out.

After leaving the police, I worked on the Scottish Index of Multiple Deprivation (SIMD), an index identifying the most deprived areas in Scotland. That work reignited my passion for using data to make a difference. We changed how we thought about and used the SIMD data.

From there, I worked in agricultural statistics, and now, as Chief Statistician, the big challenge we’re tackling is sorting out our messy data. Preparing it for new techniques and improving access to data for linkage projects are essential for conducting more exciting and impactful research.

Mark: I’m starting to feel like my career has been quite boring in comparison. We’ve got police work, cheffing, and megabats—who wouldn’t want to work with megabats? I feel like I’m on the edge of a midlife crisis here!

Ally: Mark I'm going to cut across you and ask, when you say Bacardi bats, do you mean Bacardi as in the rum?

Emma: Yes, exactly. If you think about a bottle of Bacardi rum, the cap has a picture of a bat on it. Louis Bacardi loved animals and built his own private zoo. After his death, many of the animals were given to other zoos, but his collection of megabats was preserved. It’s an incredibly important scientific collection because of the breadth of species and the excellent conditions in which the bats were kept. 

As a researcher studying Louis Bacardi’s bat collection, you also got to stay in his house. The most extraordinary part of it was the shower, which was designed like a rock formation, with water cascading from various points as if you were standing under a waterfall.

Mark: This is a good time to say we are not sponsored by Bacardi!

Emma: Definitely.

Mark: So something you were kind of picking up there along the end, but I'd like to ask to both of you really is what do you think is the hardest part about turning administrative data research into public good outcomes?

Ally: I think the main thing is that we get researchers closer to policymakers. Policymakers generally have good links with the communities they’re trying to benefit, and researchers generally have that as well. But I think the link between researchers and policymakers, when you understand the ambition behind the policy you're trying to implement, that's when you can really link the research and policy much closer together. As a researcher, you can then be properly informing and influencing how the policy is taken forward.

Emma: I couldn’t agree more, Ally. What we’ve found with UK government departments is that each one has its own culture. Really breaking down those barriers to say, "Look, it's really good to involve academics in these conversations," and making sure that academics have access to the right data so they can complete the research that produces insightful outcomes that can feed into policymaking.

Breaking those barriers down within policymaking circles is crucial so that they're not just asking the analysts within the government departments. Those government analysts should also be talking to researchers. It then becomes a virtuous circle, but it has to be done individually within each department for that culture change to happen across the board.

Mark: I think that’s something I’m very much signed up to. Academics have a lot of value to bring to these kinds of policy decisions, especially on the analytical side, and that’s what I want to do more of. I'm sure I'm not alone on that side of things either.

Emma: Yeah, civil servants misunderstand academics a lot of the time. They tend to think of academics as this amorphous group of people who all think and act the same way, which clearly isn’t the case. You've got people who want to do primary research that feeds into public good decision-making, and you've got academics who want to do different types of research. And that's absolutely brilliant. But we can be the conduit, linking those groups up who want to talk to each other and form those really constructive working relationships.

Ally: I’d add to that, especially in Scotland, where we're focused on child poverty. Not just right now but all the time, trying to make a difference. We held an event with local authorities, people supporting local authorities, ONS academics—everyone coming together in one room. It was great to see—it was a melting pot of ideas and ambition. This is part of the ADR programme, which gives us a vehicle to have these conversations and focus on specific topics, trying to solve problems.

Mark: So, Emma, could you talk a bit about what ADR UK is doing with admin data and how that links to evidence and policymaking? 

Imagine you're explaining it to my dad—he’s in his mid-60s and often describes growing up on the mean streets of Gainsborough. He’s not someone who is degree educated like myself.

Emma: Yeah, sure! The way I explain it is that every government service—whether it’s health, education, or anything else—collects data about people using that service. That’s great as far as it goes. But at ADR UK, we have this phrase: the "missed use of data." If that data stays within the department’s silo, it’s not being fully utilised. Our approach really comes into its own when we link data from one department to another. 

For example, we have decades of education outcomes data—from primary school to university. If you link that to Police National Computer data, you can understand who’s being cautioned and convicted for crimes. This helps us better understand how to prevent those crimes, especially by identifying groups getting caught up at an early age. Without this insight, policy decisions would continue to be random and less effective.

The Institute for Fiscal Studies published an evaluation of the Sure Start programme, which was introduced in the early 90s by the Labour government. It provided targeted support in deprived communities for parents of young children, it was health advice, education advice, training advice. Decades later, we can assess the outcomes for children from those areas. The benefit of the programme was particularly greater for children in deprived areas, showing that helping them lead better lives can have lasting effects on education outcomes—especially by age 16, which is a key milestone. Admin data allows us to evaluate programmes like Sure Start and learn what works over time.

Shayda: You mentioned something really interesting, Emma. Government departments collect data when people interact with services, but that data often just stays there. 

When I talk to my friends about this or do public engagement, it’s almost presumed that all departments are already talking to each other and working together, but they just want more information. Can you explain what the real picture is now, and what it looked like before ADR UK and similar programmes started?

Emma: I’ll separate two things. When government services collect data and use it for operational purposes, they’re making decisions about individuals. But when researchers access linked data across departments for research purposes, it’s a whole different thing. It’s legally important to note that researchers don’t get identifiable information. They can’t see individual names, addresses, NHS numbers, or anything that directly identifies someone. Research is done on much larger groups, analysing patterns in the data rather than focusing on individuals.

By linking data, like ethnicity from the census (which is self-reported), to police data (where ethnicity is recorded by officers), we can do meaningful research that wouldn’t be possible using data from individual services alone.

Ally: When I first joined the police, I thought they knew everything about everyone. But once I started working with the data, I realised that wasn’t the case. 

Researchers are more interested in patterns and groups rather than individual data. And when it comes to deprived areas, we want to improve outcomes for everyone, but especially for those who face the most barriers in life. Whether it’s health, crime, housing, or service access—addressing these barriers allows individuals to reach their full potential. That’s the real goal.

Shayda: I love how you mentioned the public. That’s why we’re here. Can you help us understand why everyday people should care about this?

Emma: Absolutely. The data we use is about people’s lives, and we have to engage the public to maintain the social contract. People need to trust that we’re using their data responsibly for research and public good. Public engagement has shown us that feedback challenges us to be better at what we do, resulting in better outcomes, a better website, and more meaningful conversations with the public. We have to continue this engagement.

Shayda: Ally, can you give a real-world example of how this is making a difference?

Ally: We’ve been focused on improving outcomes, especially for those who might otherwise be left behind. And that’s really what it’s about—ensuring that no one is left behind. At the end of the day, it’s about improving lives efficiently, using taxpayers' money responsibly to get the maximum benefit.

Shayda: Thank you so much, Ally and Emma. That's it for today's episode. Mark, how do you think it went?

Mark: Well, I think if you cut out all my speaking bits, it probably went OK, so not too bad.

Shayda: You’re too hard on yourself! You’re going to be a bigger personality than me by the time this series is over.

Well, we hope you enjoyed listening. You can find out more about ADR UK's work in the shownotes.

Mark: On the next episode, we're going to dive into the impact of research using data from the Ministry of Justice - which is my second favourite ministry after the Ministry of Sound.

Until then, stay curious about how your everyday data might shape society. 

In this episode, we examine how data collected by the Ministry of Justice (MoJ) is being used to drive positive change in the justice system. Our discussion explores the types of data the MoJ collects, why it is collected, and how de-identifying, linking, and sharing this information securely for research can reveal new insights into the justice system.

Amy Summerfield, Head of Evidence and Partnerships at the MoJ, shares how data linkage programmes like the Data First initiative aim to address issues such as reoffending and improve the efficiency of justice services. We also hear from David Maguire, Project Director of the Building Futures programme at the Prison Reform Trust, who sheds light on the realities faced by people in the justice system. From the probation system to outcomes for defendants, prisoners, and the wider public, David highlights gaps in understanding and what changes are most urgently needed.

Through real-world examples, this episode demonstrates how using administrative data can contribute to better outcomes for those in the justice system, support for justice personnel, and a more efficient and effective system overall.

 

Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

For information on Data First go to https://www.adruk.org/our-work/browse-all-projects/data-first-harnessing-the-potential-of-linked-administrative-data-for-the-justice-system-169/, or for information on MoJ datasets made available by ADR UK: https://www.adruk.org/data-access/flagship-datasets/?tx_llcatalog_pi%5Bfilters%5D%5Bwork%5D=800&cHash=c420033b8cba2bed85ac90343d2aeab9.

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Shayda: Mark, can you tell our listeners what's in store for today's episode? 

Mark: Today, we'll be diving into the world of crime and justice and how data might be used to transform people's lives. Think somewhere between CSI Miami and The Bill. ADR UK funds a lot of research in this area, right? 

Shayda: That's right, and for ADR UK, a lot of it is done via the Data First programme. I remember drafting the press release to announce the Data First programme in 2019 and the data space has changed a lot since then. The way it used to work is that the individual courts within the justice system collected administrative data, but they didn't really talk to each other, so it was hard to map out patterns of court use as people may enter and re enter the justice system for a variety of reasons. We've got the family court, Magistrates Court, Crown Court, the probation system, the prison system. What Data First allows us to do is link up these datasets in a responsible way so we can answer some of the most pressing questions, such as those related to racial injustice, substance abuse, rehabilitation and so on.

Mark: And with us today to help explain what some of the most pressing justice system issues are and how we might use data to resolve them, are David Maguire, who's Project Director for Building Futures for the Prison Reform Trust charity, and Amy Summerfield, Head of Evidence and Partnerships at the Ministry of Justice and project lead for the ADR UK funded Data First programme. 

Hello and welcome to the podcast, both of you. 

Amy: Thank you very much for having us. 

Mark: So, before we get stuck in we'd like to get to know you a little bit better. So we set you a little task. So can you tell us what's your favourite statistic? Amy, would you like to go first? 

Amy: Oh, my goodness, I mean, some of the justice system statistics, I can't really describe as a favourite, because, you know, these are people in vulnerable situations, sort of in, it's some of the most challenging times of their lives. What I'll say is someone said to me when I first joined the Ministry of Justice, something like 61% of statistics are made up on the spot. So that's what I'm going to say, is my favourite statistic. I'll keep it light, and I made up the 61% to add the layer to the joke. 

Mark: That’s brilliant. David?

David: So Mark, I'm hoping by the end of this podcast that I'm half as excited about data and statistics as you are, a favourite statistic, a question on a favourite statistic, which, as Amy indicated a favourite statistic is hard to think about. There's just so much data right there, and I think maybe some of that will come up in this conversation, but maybe a starter for 10 would be, it's not a favourite, but I think it's an important one, and it's from the Justice Committee's "public opinion and understanding of sentences", and it tells us that the average person’s sentence has increased from 14 and a half months in 2012 to 21.9 months into in 2021. However, when asked, almost a third of respondents to the justice committee survey believed that the average prison sentence lengths had become shorter, of which 9% thought they had become a lot shorter. 

Mark: Excellent. Well, that's, I think that's a good introduction. 

So we've got the hard question out of the way. So let's go into something a little bit easier. Amy, can you tell us a bit more about the data the Ministry of Justice collects and links together. What do you what do you routinely collect, and what was the ambition behind making all of this data available to researchers? 

Amy: When people interact with public services, any public service, that public service collects data on you or your case, for example. So when we go to the doctors, they've got our name, our date of birth, our medical history. So all public services collect a wealth of information like that, and up until now, and probably still now, it's fair to say it's vastly underused, that amount of data. Shayda indicated at the beginning, you know, it's collected on siloed systems. They don't often talk to each other. It can be fragmented. 

And in the in the justice space, it's no different. So magistrates courts didn't necessarily talk to crown courts. And I'm saying “talk to”, I mean information sharing. What we are doing through the Data First programme is linking the datasets from across the justice system so we can get a more comprehensive picture of who's interacting with the justice system. So that covers information that is collected for operational and administrative purposes, not specifically for research, but collected at the courts. So criminal courts, family courts, civil courts, through to prisons and probation service. That's the data we collect as a business as usual basis. 

But through the Data First programme, which is an investment by ADR UK, we've been able to create unique identifiers through those datasets and link cases and people across the system. So as people come into the Magistrates Court, they may go on to the Crown Court, they may receive a custodial sentence then, they go into prison, and then when people leave prison that they they'll often go under probation supervision. So we can get a big picture of kind of people's interactions across those different parts of the justice system, so that's the kind of data that we collect already. 

Instead of sitting on administrative systems, we're trying to make best use of it, both within government, but also to share it with academic researchers so they can access it and start to explore these kind of really rich data assets for some of our big evidence gaps. 

Mark: That's really fascinating and such a wealth and depth of data you have available, why wouldn't people use this? You know, you said it's vastly underused. I mean, one of those reasons, you said, is fragmentation. But why aren't we using this data? You just think it’s so amazingly detailed. 

Amy: These systems weren't set up for research purposes. They're set up kind of to support the operation of the courts or the management of prisons, for example. So they've up until now, been used for what they were intended to set up for, but we realize that there's this wealth of information sitting there. You have to be very careful that we're sharing data ethically and responsibly. 

There's a lot of cleaning to do of the data, and by cleaning, I just mean there'll be lots of data that's just not completed very well, because it's not a busy prison officer's top priority to make sure that every single field on their data management system is feel is filled out. They've got much more important things to do on the front line, if you like. So there's a lot of work that's done to sort of unpick how good the quality of the data is before we can then see what identifiers we can link to other datasets with. So it's not that we didn't think it was a good idea before. It's just been a long time coming, really.

Mark: Absolutely, like a shout out to those people who clean data. We couldn't do our jobs without them. 

Shayda: It's almost gives you hope that things might change now that data is being used more efficiently and that we have better evidence to base decision making on, important decisions. David, from your perspective, in working at Prison Reform Trust, how would you describe the state of the justice system now? And can you tell us a little bit about the Prison Reform Trust as well. 

David: I’ll maybe say a little bit about what the Prison Reform Trust is. I started at the Prison Reform Trust in January 2020, before that, I was at UCL as a British Academy post doctoral researcher. And before that, I did research on men and masculinity and education and pathways into prison. In one form or another I've been around prisons for over 20 years. I was attracted to go and work for the Prison Reform Trust, A, because it's got a fantastic reputation across our sector, and B, it was for a very particular programme that focuses on those serving the longest sentences. 

But maybe just a bit about the Prison Reform Trust. So for those that don't know, the Prison Reform Trust is a charity, and it works to create a just, humane and effective prison system, and we do this by working with people like Amy and yourselves and anybody else to generate data, research. We give advice and information, facts and statistics, and we just try and highlight some of the pressing issues across our prison mostly England and Wales prison systems. My particular role is for the programme building futures, and this work focuses on those that serve the longest sentences. So a lot of advocacy work and charities like to focus on and advocate for people in prison, but often we dodge those serving the longest sentences, because they are those that the public feel, and many feel, and we feel many should be in our prisons. 

What we try and do in this day job is we harness the expertise that we see within the prison population so those actually serving the sentences, is what we try and consult and work with on how we can better create a more just and humane space for those serving those eye watering sentences. And I think a lot of what we try and do is develop and complement other forms of knowledge and research by harnessing that lived experience. 

And when we think of long term prisoners, we often don't think of women serving long sentences. So we've made them much more visible through our invisible women's workstream. So looking at some of the pains and gender pains of imprisonment, for women, we're looking at people aging in prison. Because, of course, aging is a huge problem across prison populations. We're looking at how people progress through their sentence or not. So there's just some of the key things that that we use and we harness that inside experience to kind of add to already existing knowledges. 

Shayda: Thanks, David, I know we've spoken about the power of lived experience for research, particularly research like this. You mentioned a few really interesting areas of work. What would you identify as some of the current most pressing issues at the moment? 

David: Well, I think any of us who work around prisons or in prisons can't get away from the fact the capacity crisis that we currently are seeing. I think another big issue that we can't escape from is the remand population is a big problem, and that's risen over 80% since 2019 and now accounts for almost 20% of the prison population. So the remand population are those that might be refused bail and are put on remand awaiting sentence. That's a large part of that population. And I'm laying this out because I think some of what the Data First can help us with some of the solutions and answers to some of these current crises. 

Shayda: So Amy, David listed some important issues there currently being faced by the justice system. Is Data First, in a position now or in the future to look at some of these issues? 

Amy: Most definitely. For example, if you take the pressures on prison capacity, we can look at, I mean, obviously the Ministry of Justice does a lot of modelling and forecasting of prison capacity and everything with slightly more live data, but Data First datasets, when you can, if you when you are linking magistrates and Crown Court data through to prisons, you can look at which type of sentencing options may have an impact on whether somebody obviously goes into custody, but also longer term if they're more or less likely to reoffend. 

So for example, we know from other research that short custodial sentences are not effective at reducing reoffending, and actually, evidence suggests that community sentences for less than 12 months can be more effective in supporting people from reoffending. But Data First gives us data at a scale that's not been possible before to look at those patterns. What sentencing options are likely to improve the chances of prisoners not reoffending, for example? So that's really important insights: what sentencing options lead to better outcomes for people who have committed an offence? So that would be one way in which Data First can sort of shed light on those types of questions. 

We do know a high level that there are factors that protect the risk of reoffending. So supporting people to get a job, supporting them to address substance misuse issues, employment, education, those types of things, but where we're lacking a little bit more is: what's the relative impact of those interventions? How do you sequence those interventions? 

So, what works for who? Why? When? Those types of questions. And the Data First datasets should help start to help answer those questions. So at what point in a person's interactions with different public services, could we have intervened? Could we have better targeted services to support them, to divert them from the justice system, for example? 

Through our flagship data share between Ministry of Justice and Department for Education, we've got a lot of insights around the educational and social care backgrounds for children who end up in contact with the justice system. If we are able to layer more information into the linked datasets around what kind of services or interventions these children have had experience of, we're better able to understand what works to improve outcomes when we should be intervening. How can we improve their outcomes? 

David: I can't help but agree with lots of what Amy's just laid out there. Certainly focusing on my work with long term prisoners. One of the things that I think was touched upon there is who we sent to prison, and for how long. Those serving the shortest sentences, and the cost to everybody involved in that, for that, I think, is, is hopefully some of the consequences, the cost who it is, is something I know can be hopefully pulled out of some of that Data First data about who it is that goes, how it links to local services. 

And I think the other thing Amy is the recall, what are we sending people back to prison for? Some of these datasets might be able to give us some answers around that is, how do we stop sending people back to prison? Because, again, that's a huge population. 

Amy: So we've linked data to the probation datasets so we can now have much richer information around who were recalling to prison and what for. We published some research based on the magistrates and Crown Court linked data that provided new insights on who was returning to court and what they were returning for. I think it's around 18% or something, of defendants returned to court more than six times in the time period, you know, between 2011 and 2019 and we now know quite a lot more about what these people are coming back into prison for, the types of offences, their sentence length. 

And we should be able to, it would be a very interesting research question to look at the recall population as well. Because, as you say, the recall population is increasing. That's increasing, then the pressures on capacity of prison. We need this data. We need robust, large scale data to put to ministers, to put this to decision makers, policy makers in MoJ and across government. We need that data to sort of say this is what's happening, and this is our advice on what we think you can do to change this. 

Mark: I think that's really, really exciting, because from what you're saying is it's how can we improve upon what data we have access to? And you say doing more at scale, at bigger scale, doing more granular work, particularly focusing it on interventions and what works, on what doesn't work, and then feeding that back to ministers to make better decisions. 

Clear that you have loads and loads of data, and you know, that's being put to really good uses. What sort of evidence do you think is missing at the minute, or what type of datasets do you think are kind of missing that you think could really make a big difference, I guess, in making better sentencing evidence decisions, or even, you know, making a real difference to people's lives? 

Amy: The thing that immediately pops into my mind is we have very limited data on victims and witnesses, and that's something that academic researchers are always saying that would benefit them in terms of the impact of crimes and things. So data on victims and witnesses would be helpful. 

The other thing is, so the datasets at the moment are very they can tell you the what, they can't tell you the why and the how. Within our kind of court transcripts and judicial sentencing remarks, they'll have information around mitigating and aggregating factors, so the factors that were taken into consideration when people were being sentenced. And I think if we could find a way of utilising that information from court transcripts and so on, which is not a straightforward thing to do that anyway, I think that would give us a more richer picture of the how, how decisions are made. 

What we are doing in Data First, we're in the process of sharing a dataset called Oasys, which is offender assessment data, basically, looks at the risks and needs of people in our prison system. So it looks at, you know, kind of more mental health needs or educational needs, or specific incidences that they've experienced while they've been in prison, so incidences of self harm or violence or adjudications, that kind of thing. That gives us a much richer picture of what their experience within prison has been like. But then the impact those experiences might have on, for example, their sentence length or their probation experience, whether or not they come back into the system. We're looking forward to academic research and cross government research making use of that Oasys data. 

Shayda: One thing that I'm sure applies to all administrative data research, but particularly might come to mind here, is, how do we protect individuals from being profiled with this kind of research? Can you give us some information around that? 

I think I mentioned earlier, it's our responsibility to make sure that we want to maximise the use of this data, so we can get experts in academia and across government to maximise the use of it for new policy and practice insights. But we also have to be mindful, this is people's personal data, and for it to be a public asset and for people to use it, we need to be really careful with it. We have to make sure that it's only shared on secure platforms. It's only shared with accredited researchers. 

Amy: All of our data we share with the ONS secure research server, and that operates on the five safes framework, but essentially it means every project researchers want to use the data must be approved and accredited by data owners. All researchers that access the data must be accredited researchers, so they go through certain training, they sign up to certain conditions of access. Nothing can come out of that server that could identify an individual person. Data owners like the Ministry of Justice and the ONS SRS will not release any information from that secure server that's going to identify an individual, so whether that's a person in prison, whether it's an individual judge or a student, you can't take that information from the secure platform. 

We have engaged with people with lived experiences or advocates for those with lived experiences, and generally the response is very positive about making use of that data for a public good. But we recognise that there have also been concerns from privacy lobbies that we've had to respond to to reassure that no one will be identified in the use of this data that we share. 

Shayda: Thank you. That's really reassuring that MoJ has done so much engagement with representative groups, charities, lived experience, as you just mentioned, Amy, and one of them is the Prison Reform Trust. 

David, you spoke about the power of lived experience. We've got loads of researchers applying to access these justice datasets. If there's some advice or a message that you can pass on to them, or something that you'd really like them to be mindful of when analysing these datasets, what would that be? 

David: There's a few things that I think might be helpful to just put out there as somebody who doesn't work within these big datasets. If you speak to anybody in prison and across prison about how things are inputted about them, the data is only as good as it's inputted, right? And the way sometimes that, and Amy's alluded to this, we look at prison staff, we look at the pressures that they're under. 

We look at people who work in social work and in probation, all these services for some time have been under huge, huge pressure, and the data input in, and the quality of that data has been raised as being questionable by those subject to that data. So you'll speak to people in prison, and they'll often say, Dave, I got this print out, and it's just a cut and paste from 10 years ago. It's literally a cut and paste from 10 years ago, and I've gone into the parole board with this, or I've gone into have my security reviewed, and the information is, in some cases, decades out of date. 

It's about real people. It's about people we've lived next door to. It's about people we've met on the landings. It's about people we've met in the care system. It's about people we've supported, and it's people to us, and often some of people's most painful, harrowing life experiences, whether it be a long sentence, whether it be losing your children, whether it be kind of exclusion from school. So these datasets that you have that people have to come to cold and objectively, I would always try, and although people have to be separated, always reinforce that these are some of people's most painful, profoundly life moments. 

The lived experience thing is important, but I think we often have to keep it into perspective as well. I worry sometimes that we use this lived experience as a legitimacy vehicle, and I think there's a conversation that I've been trying to instigate is how we engage much more critically with how we use and draw from lived experience, and how that is part of a knowledge and it contributes to other forms of knowledge. And I think as researchers, as practitioners, as academics, we need to be much more mindful in how we're signalling our use of lived experience. 

Mark: I think that's really powerful. And as a data scientist, I think sometimes we're a little bit removed from that lived experience. I'm a really big advocate for engaging with people lived experience to make sure that what I do, and I think what we should all be doing, is doing relevant and impactful research and not some sort of tokenistic engagement. It should be a meaningful voice that is embedded throughout everything that we do. 

David: And just perhaps one other final point is we are no way representative when we draw on lived experience, there are often, if you’ve been around long enough, you'll see that it's often the very same voices that we're drawing on, which is a very, very small part of the groups that we're trying to represent. So some very kind of difficult issues to tackle there. And I think that conversations going forward, we all need to be a little bit more reflective in what lived experience is and how it contributes to knowledge. 

Mark: Amy, I know you've been doing some excellent work in your hub, particularly engaging with external researchers. Could you tell us a bit more about that? 

Amy: In the hub, what we're trying to do is take a more strategic approach to developing the evidence base. So there is a number of research questions, number of evidence gaps or evidence needs that we need to understand about our users and what works to improve their outcomes. We want to focus on answering those more, longer term questions. 

We're also working on improving the use and the accessibility of evidence, as I've said before. So are we making best use of the evidence that's already out there? And in doing all of this, we're improving the collaboration that we have with academic researchers. 

Shayda: I think that collective approach in acquiring evidence is so important to tackling complex issues. I think we could be talking about this all day, really, but we're running out of time now. 

So thank you, Amy, and thank you David for such a fascinating conversation and inviting us a little bit into your world. We'd like to close each episode with the bottom line, which is, quite simply, why should the average person care about this? 

David: We send people to prison for crazy, crazy amounts of time. We send people to prison in some of the longest sentences than nearly all our European counterparts. And if we look at what we get out of them sentences for the money we put in, and what we provide in decades keeping people behind bars, the public would be completely at a loss. So I think that we need to work much harder to win public trust in what it is that we do and what it is that prison service does, and how it can use data to much better improve the outcomes. 

I think, before you bring the public along, is you've got to kind of have something to show them that works. And currently our prisons and our probation and everything else, the public has very, very little knowledge around it, but mostly they don't have faith in it. And when we go to release somebody, we're very easily whip them up. And rather than them saying, I have faith that the systems have worked, they have no faith that the systems have worked. And therefore, public pressure works to keep people in prison for longer and not let them progress to get out. 

Amy: It's a big question. You can come at it from a number of different perspectives as well. So why wouldn't you want to understand what works to improve people's lives? Why wouldn't you want that, because it's a moral thing to do, because we have these insights, we should be using them. You could look at it from a financial perspective. If you invested in one area, you might save money in another. 

I think why data is important is because it's another layer of evidence, another layer of weight to add to the discussion and the debate. If you can say, for example, this evidence strongly suggests these short sentences don't work. It's more than a hunch. You've got it kind of a little bit more in black and white, and I've mentioned before, ministers will want to see this evidence before they start making decisions. 

Shayda: Well, that's a lot to sit and think about, so our I think we should leave it there. Thank you both again for taking the time to be with us today. More information about Data First and the Prison Reform Trust can be found in our show notes. 

Mark, what was your biggest takeaway from this episode? 

Mark: I think for me, it's just how much has happened in such a short period of time, and makes me feel more excited about, you know, the amount of data that's being used to inform real world decisions. 

And whilst there's still much more to come, you know, it really gives me hope that we are using data to make better decisions in how we think around justice and crime. 

Shayda: Absolutely. Can you tell our listeners what's in store for the next episode? 

Mark: So on the next episode, we're going to dive into the impact of research using data from the Nursing and Midwifery Council from Scotland. 

Until next time, stay curious about how your everyday data might shape society.

Nursing and midwifery form the backbone of the UK’s healthcare system, but the sector faces significant challenges - impacting both professionals' wellbeing and the quality of care patients receive. Administrative data collected by the Nursing and Midwifery Council (NMC) holds the key to understanding these issues, and research using this data offers a path to evidence-based solutions.

This episode unpacks the wealth of information the NMC collects, how it’s being made available for public good research, and the ambitions behind linking it with other datasets. From analysing workforce trends to revealing inequalities, this data has the power to drive policies and interventions that better support nurses, midwives, and the communities they care for.

Our guests, Caroline Kenny, Head of Research and Evidence at the NMC, and Fiona Gibb, Director of Professional Midwifery at the Royal College of Midwives, share their journeys into the sector and provide insight into the experiences of nurses and midwives. They discuss what’s missing in the current evidence base and the meaningful improvements they hope this research can bring to the field.


Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

For information about nursing and midwifery data recently made available by ADR Scotland, go to https://www.adruk.org/data-access/flagship-datasets/nursing-and-midwifery-council-register-linked-to-census-2021-england-and-wales/ and https://www.adruk.org/our-work/browse-all-projects/exploring-the-dynamics-of-the-nursing-and-midwifery-workforce-749/. 

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Oh, episode 3! We’ve made it here so far. It’s good, isn’t it? It's like the long jump—you put in a couple of tries. You know, the first two goes, you get into the sandpit, but you really want to make the third jump count to get into the finals. That’s how I’m feeling today.

Shayda: We’re going for gold today, Mark! Are you excited, because we’re talking about health data?

Mark: I mean, I feel like you’ve set me up here because now the pressure’s on—I’ve got to say something interesting. I’m a bit worried you might find out it’s all just a charade. You know, maybe I don’t know anything about health data, I got my professorship by saving up coupons from the backs of cereal boxes over the years.

Shayda: Coupons from the backs of cereal boxes? Makes me nostalgic.

But on the topic of health data, we are specifically talking about data on nurses and midwives. I don't know if I ever mentioned this, but my sister is a nurse, and it's pretty strange when the silly person that you grew up with is actually a serious professional in a very important job. But unfortunately for me—and probably fortunately for you—she wasn't available to be featured in this episode.

Mark: Yeah, I’m a bit disappointed we don’t have any embarrassing pictures or stories of you growing up. Maybe we’ll save that for another episode.

But speaking of nurses and the U.S., and my segue from that: did you know, Shayda, that one of the longest-running cohort studies is centered around nurses in the U.S.? This is the Nurses’ Health Study, and it has been following nurses since 1976. It’s actually one of the best resources we have for a longitudinal follow-up of health and understanding the risk factors around health, particularly focused on nurses. 

Shayda:  Wow! Go nursing! Although, I’m wary about our producers intervening here, as this isn’t an administrative dataset, so we better move on.

In today’s episode, we’ll explore the potential impact of data from the Nursing and Midwifery Council being made available for public good research by ADR Scotland. We’ll discuss the data they collect, the ambitions behind making it available for research, what the data can help us understand, and how this might lead to real-world impact. We’ll also discuss the experiences of nurses and midwives on the ground, including their perspectives on what’s happening in the sector, what evidence we’re missing, and what changes they’d like to see. 

Mark: And to help us do that, we have two wonderful guests with us today: Caroline Kenny and Fiona Gibb. Welcome to the show, both of you. 

Shayda:  We’d like each of you to introduce yourselves to our audience.  Fiona, let’s start with you. 

Fiona: Okay, well, thank you very much for having me. My name’s Fiona Gibb, and I’m currently the Director for Professional Midwifery at the Royal College of Midwives.

I’ve been working with the RCM now for a couple of years. My role is across the UK, and my portfolio mainly covers anything to do with education, research, and leadership. That’s why I’m really excited to have this conversation with you today.

My background is as a midwife—I’m a registered midwife. I was always interested in women’s health from a very young age, and midwifery caught my attention because of what I saw on television. There used to be documentaries on old Sky channels, like Student Midwives, which was a fly-on-the-wall documentary about people at university studying to become midwives, and another one called Babes in the Wood about a birth centre.

I was fascinated by these. I initially wanted to do something in communications or media—I had a background in amateur dramatics. But at the last minute, I just thought: what am I doing? Here was a topic I was truly interesting in and fascinated by.

At 18, I applied for direct-entry midwifery and qualified at 21. I worked clinically in many areas across the northeast of Scotland and Aberdeen where I'm from. Latterly, I was a senior charge midwife in labour wards, but I also had a passion for teaching so, when an opportunity came up to teach formally at university, I jumped at the chance. I only intended to stay for a year but ended up staying for eight! I was a senior lecturer for the midwifery program at Robert Gordon University. That was a great job.

When this role at the Royal College of Midwives came up, I thought it was the perfect chance to work across the UK, advocating for midwives, promoting safety in maternity services, and creating career opportunities in midwifery.

Shayda:  Your journey in practice and education, from being a student midwife to training new midwives, and seeing how education, the curriculum, and exploring women’s health have changed, it's fascinating.

Fiona:  There’s been so much change in every aspect of the role. The role of the midwife has changed, the needs of women and families have changed, society has changed, and we’ve made it through global pandemics. The way we deliver care and education now is completely different from when I started in 2004. We've learned a lot and I’m sure the changes will keep coming. 

Shayda: Caroline, tell us about you.

Caroline: Sure! I’m Head of Research and Evidence at the Nursing and Midwifery Council (NMC). I’ve been with the NMC for about five and a half years now, which has flown by—it's a bit scary saying that out loud.

My background is in research. I started by exploring issues around social exclusion, poverty, and education, carried on doing a master’s degree, followed by a PhD. The logical next step seemed to be move into academia, so I spent five years there.

One of the things that drove me was, perhaps naively, I wanted to make a difference. I often felt frustrated that the link between my academic work and making a difference to people's lives seemed quite distant and it wasn't easy to see the impact that work was having. 

So I moved into Parliament for five years, which I absolutely loved. It was interesting work — I won’t lie, I loved flashing my pass to get into the Palace of Westminster. My role was all about increasing the use of research in parliamentary debate and scrutiny.

Then this opportunity at the NMC came along. The more I looked into the organisation and its role, the more taken I was with the possibility of making a difference. So that’s how I’ve ended up where I am today.

Shayda:  It's a huge relief to know that people in decision-making roles and positions of authority are motivated by things like wanting to make a difference. I really love your story of starting in one place, exploring social exclusion and issues facing disadvantaged people... I'm really pleased that someone like you is working for the NMC, because you're looking out for people like my sister. 

Caroline:  Yeah, well, I mean, we wouldn't be here without people like your sister and people like Fiona. So yeah, it's a privilege, if I'm honest. 

Mark:  I think it's great to be able to just flash your pass to get into the palace, you know. That's the sort of thing I'm quite jealous about. I wish I could flash my pass and get into Westminster. The closest we've got at University of Liverpool is we used to get queue jump at the pub chain Walkabout, but I don't think that's quite on the same level as Westminster. 

Okay, so we've been asking the same question to all of our guests as part of getting to know them a little better, although I feel like we know you both really well now.

So the question is, what is your favourite statistic? Fiona, do you want to go first?

Fiona: Yeah, I thought about this, and I have to admit my one was a bit of a comedy statistic. I once saw that 93% of people don’t fact check evidence they read on the internet, and that really made me laugh and kind of grounds me a little bit in terms of - statistics can tell you quite a lot of things, but they might not necessarily tell you the whole picture. It's about how you interpret them, how you use them, and how you translate that information to other people.

And it reminded me of that scene in Anchorman, if you're a movie fan, when you know, "60% of the time it works every time." So those kinds of comedy stats for me. I mean, I love a good stat, but I always take it with a pinch of salt. So sorry, it’s a bit of a comedy one for me, but yeah, it made me laugh. 

Mark: That's great, and we’ve got our first Anchorman reference in this podcast series. So that’s even better! That’s like two wins in one stat. Caroline?
 
Caroline: I have to admit this was a tough one for me, because I was like, "Oh, I don’t know what is my favourite?" So after much googling, I’ve gone with the fact that a cloud weighs a million tons, which did kind of blow me away.

Mark: It feels like in the UK, that’s all we’ve been dealing with—just very heavy clouds this whole year.

Shayda: Yeah, I’m pretty sure the UK variant of cloud is much heavier than the rest of the world. Let's move on to hearing about how data shapes experiences in your sector. 

Caroline, can we start with you first? Can you tell us a bit about the types of data the Nursing and Midwifery Council collects and how and why it’s used?

Caroline: Yeah, of course. So the Nursing and Midwifery Council is the UK independent regulator of nurses and midwives in the UK, and also nursing associates in England, which basically means that if anyone wants to work or practice as a nurse, midwife, or nursing associate in the UK, they have to be registered with us.

So we collect a whole host of data and information that supports our ability to regulate nurses, midwives, and nursing associates. As a regulator, the data is collected for our purposes, so it’s not always in a format that lends itself easily to analysis, but there’s lots of information that we have that is both useful for us but also increasingly, we’re aware that it is relevant and useful to people outside of the Nursing and Midwifery Council.

So we have information about the people who are eligible to practice, such as where they were educated or trained, both geographically and also the university or institution, information about their diversity characteristics, stuff about where they live. Bits of information about where they’ve been practicing, also lots of stuff about the qualifications they have, there’s a lot of information that we have that’s important for us as a regulator, but could also be really useful to wider researchers.

Mark: So these data are not really created for research purposes, but they clearly have lots of value beyond what they were originally collected for.

Can you tell us a bit about why the Nursing and Midwifery Council thinks sharing their data for academic research is important, and could you possibly give a few examples of how it has been used?

Caroline: Absolutely. I think it’s fair to say that we are on a journey, along with many other regulators, to try and get our information and data to a point where it can be shared more easily with others, so that they can use it to generate useful insights.

There's an awful lot of expertise out there that we want to benefit from ourselves and that we also want the professionals we regulate to benefit from, and ultimately we want to be used to improve people's care.

Mark: And Fiona, if I could bring you in here as someone who works more with people and less with data, how do you feel about all of this? Were you surprised that such data could be used by researchers? Are you happy with them having access to these kinds of data?

Fiona: Yeah, I think it can show us quite a lot about where we are, how far we've come, and where the gaps in knowledge and evidence are. 

Within the Royal College of Midwives, we collect data as well. But as we are a professional organisation, we're a trade union, run by midwives for midwives, we have about 50,000 members. We listen a lot to them in terms of who they are, where they come from, where they work, what's important to them. We collect quite a lot of qualitative data. However, the quantitative data we use is often from other organisations, people like the NMC, in terms of how many midwives are on the register, how many people leave the register, and when they leave the register.

We also look at things like UCAS - the University and College Admissions Service data - how many people are applying to be nurses and midwives, how many are graduating, what's that workforce pipeline? For us, this data is really important because it gives us a bigger picture of who's coming into the profession, are they staying, and have we got enough for the care we need to provide? It helps us in terms of campaigns and areas we might need to look at to support the workforce and ultimately improve the care we're giving.

Shayda: We're now aware that the data being collected isn't just being used for its original purpose. It's now being made available to researchers as well. 

Caroline, could you tell us a bit about how this data is being stored safely and securely, and what precautions are in place to ensure nurses' and midwives' privacy is being protected and that discrimination isn't taking place?

Caroline: I think it's really important to make it clear that we consider any request to use or share our data very carefully. As a public body, we must be clear about the legal basis for sharing any data. There are prescribed legal bases.

We also need to ensure the relevant paperwork is in place, so we have a robust data-sharing agreement, and then making sure we're being clear with people—in this case the professionals on our register—about how their data is used and give them the option to opt out. We have a privacy notice on our website to make this clear. 

Shayda: Thank you, that's very helpful. Fiona, is this the first time you're hearing about how the data is stored and shared? And if so, or even if not, how do you feel about these processes? Is it reassuring for you?

Fiona: Yeah, as a registrant myself, I don't think when I first joined the register, I understood the full scope of what a regulator does. If I’m being completely honest. You just trust that they've got your best interests at heart, and every three years, you provide evidence that you're still fit to stay on the register. 

As I’ve progressed in my career, I've learned more and started to see the NMC’s yearly reports, the more I’ve gotten interested in what can be gained from that information: where our staff come from, their average age, the roles they’re in. I think it’s really important to collect this data because it allows us to triangulate it with other data for example from the NHS, in terms of the number of people coming through the doors, do we have the right skill mix on the register and across the multi-professional teams to deliver that care?
 
I think it’s really important, and if people are listening to this podcast and starting to understand what the NMC does and what data they have, that can only be a good thing. A lot of professionals probably only know the bare minimum because, let’s be honest, they're very busy people.

Mark: If we can take this forward and think about the research done using these data, knowing that they're handled securely, has anything particularly surprised you about the process of sharing data for academic research and the outcomes that have come from opening up and sharing data?

Caroline: To be honest, I've been blown away by the response we've had—both from the professionals on our register and from the organisations we work with, as well as the research community. We've known for a long time that there’s a real call to action from these groups. They’ve said, "Look, you're sitting on a gold mine. Use this data to help improve the situation on the ground and support the professions you regulate to provide the kind of care we all want." 

Likewise, they want us to use data and insights from outside the NMC to improve our work. We've heard that message for a while, and initiatives like our collaboration with the Office for National Statistics and Edinburgh Napier University have been received really positively.

Another surprise is the topics that people come up with. It’s one of the great things about these initiatives: you collaborate with people who bring different perspectives and ways of thinking. They come up with topics we wouldn't have thought of.

Fiona: For me, it’s probably more practical. As someone who would use the data, I’ve been surprised by how difficult it is to obtain. Quite rightly, confidentiality and data safety are important, but coming into a role like mine now, when I'm looking across the UK and trying to think of solutions for current problems, to have a dashboard of data to get to the crux of what the issues are—not just doing it based on anecdotes but with evidence to back it up to say this is what the problem is and where it's happening, and you can do a more targeted approach - it sometimes feels like you’re driving blind. 

Mark: I can feel your frustration. Sometimes we think all these data systems are joined up, and we’re making the best use of our data, but the reverse is often true. We don’t make the most of all the available data, which, as you say, is frustrating.

Shayda: I’ve picked up on a similar sentiment doing public engagement. There’s a real want to make more use of the available data when it’s shared safely and securely. But, as you’ve flagged, Fiona, there’s a very cautionary attitude towards sharing data. .

Caroline, something you mentioned was there's an interesting list of research topics that came up from analysing this data. Any research that’s particularly interesting to you or that you’re excited about?

Caroline: We’re really excited about the ADR UK fellowship. This is the first time the NMC has been involved in such an initiative, so just being involved is a massive cause for celebration for us. We’re also really pleased that one of the proposals to use NMC data linked to the Census for England and Wales has been funded.

This project, by Dr. Iain Atherton at Edinburgh Napier University, will look at understanding the transient nature of the workforce. This is something we’re not able to do ourselves, so it showcases the power of this collaboration.

Shayda: Yeah, that's very interesting. Thank you. And to just take it back very quickly to what Fiona said about these datasets, they almost verify what we know to be true because they are so big. They are covering so many people. It's like whole population-level datasets. And so having that ability to be able to point to the data, and, have it sort of validate qualitative research or smaller quantitative research is extremely powerful. 

I think we’re kind of close to the end now. Is there anything else that you want to cover before we wrap up? 

Fiona: Well, I was just gonna say, I suppose in terms of, the projects and what would be really useful for us is just learning a bit more about, who are our nurses and midwives? We know they are predominantly female, but how does that relate to things like having children or caring responsibilities? How does that relate to equality, diversity, and inclusion? We know as a profession that we don’t proportionately represent the diversity of people that we care for, who are these people? When do they start? How can we retain them? When do they leave? 

We know from some of the data we’ve done in the RCM that midwives are working significant unpaid hours to keep services safe. That information would make it really interesting for people in government as well in terms of how we make our strategic decision-making and conversations about safe staffing, safe pay, and ultimately attracting people to the profession.

Shayda: Absolutely, Caroline. I know you mentioned Iain’s project. Do you think that would cover off some of the concerns that Fiona raised?

Caroline: Yeah, absolutely. I think, you know, the research project that Iain will be doing is a really good start on that journey. So it will give us really good insights which will hopefully help to influence funding of education and training places. It will give us insights into workforce planning. So we can see more clearly, whether people do move from the region, the geographical area where they trained, into other areas. And if so, you know, where do they go and what are they doing? Potentially, the movement between sectors. So, do people move from education and training into the NHS and end up staying there, or do they combine that with work in the independent or private sector? 

But what we really hope is that, this type of initiative and our efforts in this area raise awareness of us and the information that we hold, and that takes on its own life about generating interest in using this data. So that over time, what we get are more requests not just to use our data, but to have it combined with other sources. We know education is a big gap for us, so we’d love it to be combined with education sources. There’s so much of the data out there that it can be combined with, and as long as that’s done appropriately and safely, then I think that’s where the key will be. That’s where all of these questions will be able to get answered.

Shayda:  Absolutely. I’m personally a huge fan of a multi-pronged approach of combining quantitative data and qualitative data. So weaving in stories, testimonials, narratives in with data analysis. It’s exciting that we are at this point that we are now using this data for research. And I suppose it’s only up from here.

But on that note, I just want to say it’s been fascinating speaking to both of you and learning more about your individual stories and the inspirational work that you’ve been doing in providing healthcare and ensuring that those who do provide healthcare are taken care of as well.

As we’re coming to the end of our episode, we like to end each segment by asking everyone what the point of all of this is. So we’d really like to hear from you about what your work means to you, and how it makes lives better. I know this has sort of been the main topic of conversation, but in a sentence or two, what does this all mean?

Fiona: For me, there’s probably two meanings for this. It’s about the people who are working and providing that healthcare. What can we learn about them? How can we make sure that we keep them in the profession, how are we campaigning to support these people to stay and look after their wellbeing, their financial implications? So there’s that element for me, that it’s about the midwifery profession and making sure that stays strong.

Ultimately, as any midwife would tell you, and nurse, it’s about the people that we care for, and we want to make sure that maternity services are safe and effective.

Caroline: I'd agree with everything that that Fiona says. For us ultimately, it's about improving people's care, as a regulator. It's our role to protect the public. We want to encourage research that improves the quality and safety of people's care. And hopefully, through these types of initiatives and through encouraging research, we can do that.

Mark: Thank you. I mean, it's really important to think about these challenges in the sector more broadly, and about how we can respond to those. 

So, if we imagine that Keir Starmer has just entered the chat in this podcast, he's clicked the wrong link, he's ended up here somehow, and he's been listening to what you just said... he's really passionate now about dealing with these issues. What would you say to Keir now? And what would you like to see happen? What would the change you'd want this new government to bring in?

Fiona: Wow! That's like a million-dollar question, isn't it? I suppose I would want him and the wider government to value the work that we do and the care that is needed. And I don't think you really need to go a day at the moment in this current climate that maternity services are not in crisis in the UK.
 
And I think we have to understand that everyone has some contact at some point in their life with healthcare, with midwives at the moment, to help him understand who they are and fair pay, appropriate staffing. This is not just about numbers. This is about the complexity and the quality of care that's needed.
 
I'd probably talk his ear off about flexible working as well and safety at work, and, you know, understanding that we've got a multi-generational workforce with different priorities and different needs. And we constantly need moving, but that needs to be appropriately funded and supported and valued for what it is.

So, yeah, we will see what it brings, and I know there's a lot of work going on reviewing the NHS at the moment, and we'll be there making sure that we're constantly chapping on the government door to remind them of that. I don't have a pass like Caroline, so I think I have to wait in the regular line, like everybody else, but we'll still be constantly chapping on the door. They won't be able to ignore it.

Shayda: Well, that's everything from today's episode. Thank you to our guests, Fiona and Caroline, and for you for listening.

Mark, do you want to tell our listeners what's in store for next time?

Mark: On the next episode, we're going to sunny Old Wales. Well, not physically. We're going to be talking to ADR UK's Welsh branch about how they're using administrative data for planning for the health needs of the future. 

Until next time, stay curious about how your everyday data might shape society.

Wales’s health and care system is grappling with complex, interconnected issues and opportunities, including an ageing population, inequalities, and the rise of new healthcare technologies. Tackling these now and in the future will require evidence-based policies and strategies that connect health outcomes with broader social factors such as housing, education, and income. A recent Welsh Government report, "Science Evidence Advice: NHS in 10+ Years" (aka. the SEA Report), highlights these intersections and guides the nation’s vision under the A Healthier Wales strategy.

In this fourth episode, we explore how administrative data is uniquely positioned to help. We’re joined by Tracey Breheny, Director for Strategy and Corporate Business, Health, Social Care & Early Years Group at the Welsh Government, who unpacks the insights these linked datasets provide, the current situation facing healthcare, and the potential of data-driven policymaking. Dot Williams, Project Officer at the Butterfly Conservation and member of the SAIL Databank Consumer Panel, offers a personal perspective on navigating Wales’s health services and shares her vision for positive change.

From improving workforce conditions to addressing health inequalities, this episode reveals how data is shaping a healthier, more equitable Wales.


Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

For information on the Welsh Government report and strategy go to https://www.gov.wales/report-projections-health-evidence-and-policy-recommendations and https://www.gov.wales/healthier-wales-long-term-plan-health-and-social-care.

For information on ADR Wales work in the areas of health, wellbeing, and social care, visit https://www.adruk.org/our-work/browse-all-projects/adr-wales-themed-projects-health-and-well-being-1/, https://www.adruk.org/our-work/browse-all-projects/adr-wales-themed-projects-social-care/ and https://www.adruk.org/our-work/browse-all-projects/adr-wales-themed-projects-major-societal-challenges/.

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Mark: Wow! Episode 4. We've come such a long way in these 4 episodes. I was thinking just about that last night, and in particular, after watching an episode of Sherwood, which I must say is a Connecting Society top TV tip, if we're if we're allowed to say that. But in many of these kind of TV series, there's often a twist, and it sort of comes in at Episode 4.

So I was starting to think on my way in this morning. Should we have a twist? What could be the twist? Are we going to have to start solving murders involving administrative data where we piece things together? Maybe I'm overthinking this. What do you think, Shayda?

Shayda: Very genuinely, don't get me started on true crime. I love a good true crime flick.

Mark: Maybe we'll put that in a series 2 or something like that. We could always diversify a bit more. Well, Shayda, have you done your homework for today's episode?

Shayda: Yes, I did. For the listeners: we were tasked with reading the recent Welsh Government report, "NHS in 10+ Years". The report talks about the key population health challenges facing Wales, including how they are linked to broader factors, such as housing, environment, education, and income to guide the Welsh Government's A Healthier Wales ten-year strategy.

We've added links to these reports in the episode notes for all of you who would like to read more.

I studied bioethics for my master's. So I was really interested in the report's mention of social determinants of health which are non-medical factors like where you live or your work experiences that can influence your health outcomes. What about you?

Mark: Yeah, it's really good. I I really enjoyed the report, and it kind of made me realise that I spent a lot of time teaching about aging populations, but not necessarily thinking about some of the consequences of those in health terms.

So in the report it talks about, for Wales, that we're forecasting that diabetes cases would increase by 22% in the next 10 years, which seemed to me like a big number. I wasn't quite expecting that as a kind of indirect consequence of an aging population.

It feels like I've spent the last kind of 20 years from school into university and into my job talking about aging populations and how we need to prepare for them. But actually, we need to start responding because we're already starting to see these impacts. And so I thought that was really fascinating.

Shayda: Yeah, it's all becoming real now.

I was unsurprisingly drawn to the fact that poverty and social inequalities were framed as health inequalities. I really liked that, and I also really liked how the report flagged that addressing these would need to work in tandem with health interventions to support people living healthier lives overall.

It just goes to show how complex the picture of health and well-being is and takes me back to reading Michael Marmot's work in uni.

Mark: Yeah, I really appreciate that focus on inequalities. You know, that's something that I'm very much interested through my day job.

And it made me sort of think that, are we starting to do plugs on the show? And you know we'll be able to start plugging reports, or what other people do.

Then it got me thinking, well, this could be a great way of me meeting all these stars and celebrities. We could get on someone like Hannah Fry coming to talk about their new Christmas data book out there. You know, this could be my chance to meet some of my heroes and the people I really look up to.

I think I'm probably getting too far ahead of myself.

Shayda: Hopefully, the producers are listening to this. Maybe for Series 2, we can do a segment on "celebs talk data". But for now let's dive into today's episode.

Wales health and care system is grappling with complex interconnected challenges, including, as we discussed, an aging population, inequalities, and the rise of new healthcare technologies and tackling these will require evidence-based policies and strategies, something that administrative data is uniquely positioned to help with.

ADR Wales, ADR UK's sister branch, is already expanding research to access health and care data and is linking it with other data providing cross-cutting evidence around well-being in Wales. And we will explore how all of this fits into some of the health and care issues facing Wales today.

Mark: And to help us do that, we have two wonderful guests with us today. We have Tracey Breheney from the Welsh Government, and Dot Williams from the charity Butterfly Conservation and member of the SAIL Databank Consumer Panel.

Now, SAIL, what's that stand for? Well, it stands for Secure Anonymised Information Linkage. The SAIL Databank is where Welsh data is securely stored, and the consumer panel is a panel of members of the public who advise on how data from the SAIL Databank is handled and used.

Anyway, welcome to the show, Tracey and Dot.

Dot: Thank you for having me.

Tracey: Thank you. Thanks very much.

Shayda: Welcome. Please introduce yourselves and tell us a bit about you, like where you're from and what you do, and please, no technical jargon. Tracey, we'll start with you first.

Tracey: Okay, thank you, Shayda. So, prynhawn da everyone. My name is Tracey Breheney.

And in terms of kind of introductions, really, I'm a director in the health, social care, and early years group of the Welsh Government. And I've worked for Welsh Government, and before that Welsh Office, for 38 years.

So a career civil servant, and a kind of member of the of the policy, professional part of Welsh Government, so very much a kind of policy background, and really pleased to be part of this. Given the kind of years really of working closely with analytical and other colleagues to make sure the evidence does inform policy work that we've done so great to be here. Thank you.

Shayda: Can I ask you a question? What did you study at uni?

Tracey: Well, I had a funny sort of route, really. So I joined the Welsh Office when I was 18.

So straight from A Levels, actually. So, but at that time, they had a scheme where, if you were 18, you could do your kind of university, you could do a course, one day a week. So that's how I did my university experience. It was it was a public affairs course, and I did that over a kind of day-release basis while working at 18, as I said, in the Welsh Office then.

And my career history is very much as someone who's kind of started as an administrative officer in the Welsh Office, and I've worked pretty much every grade, every level through the organisation. So that's my career history.

Shayda: Wow! That's very inspiring, and sounds like if there was one person for the job, it was definitely you.

Tracey: I'm not sure, I'm not sure. I mean, I think there is swings and roundabouts, aren't there, in kind of having that as your kind of route in, really. But what I found is that actually, I've mostly worked on the social policy side of Welsh Government.

So I've done stints in local government for 10 years. I was head of the child poverty unit, and on the poverty policy part of Welsh Government, which was fantastic. And then for the last 13 to 14 years, I've been in the health group.

And I think, you know, having moved around different policy areas, although linked, as I said, because they've nearly always been on the social policy side, has been fascinating, really. 

I think the thing that's really helped me in terms of working at each grade, if you like, and level, is that you have a real understanding of the teams and working at different parts of the team, really. So, it's been brilliant, brilliant.

One of my favourite times was working in the Devolution Unit in 1997 to 1999, which was the—there were 20 or so of us that set up the National Assembly for Wales, when, of course, the Devolution legislation was going through. So all sorts of jobs.

Shayda: Yeah, it must have been very exciting. And I think, having been in this space for so long, you've really seen how it's changed, and probably your experience in all these different teams has really helped evidence how a lot of how so much is linked to health.

And that we really do need to communicate across different themes and different teams to help, you know, improve the lives and well-being of people, and that's pretty much the topic of the report.

So yeah, it's great to have you on. Dot, let's go with you.

Dot: Okay, I've got quite a varied background. As you said, I work for Butterfly Conservation at the moment, 2 days a week, on a special project called "Natur am byth!", which is about saving the rarest species in Wales.

But, more importantly, it's about connecting people with nature because of the evidence that shows that connection with nature is actually good for people's well-being.

But my background is actually in social work and in teaching social work.

I became quite a senior manager in social services, worked in various authorities across South Wales, and worked with lots of people who lived in poverty, and as a result, maybe developed certain health conditions and all sorts of things like that.

I got involved with SAIL—the consumer panel—when it was first set up in 2011. I had started a health journey myself at that point, having been diagnosed with rheumatoid arthritis, and because I was attending hospital on a regular basis, this was being set up. So I got invited to apply, and I've been involved with the panel ever since.

And certainly the experience from a layperson's perspective is—it's so important to hear consumers, patients, whatever you want to call them. People like me, people like you, who may be at the receiving end of the services, that we actually have an input into how those services are delivered and how research can be shaped. So I think the role of the layperson in that sense is really, really important.

How I've ended up in conservation, I do have a master's degree in conservation as well as all my social work qualifications as well. So I'm now lucky enough to combine both.

Mark: I totally agree with your point. You know, if we're going to make a difference to society across a whole range of social and health issues, we really need to be listening to people with lived experience of those issues and not having a kind of top-down imposing of how we think the world works. Because otherwise, it's just not going to be effective or meaningful, really.

Dot: No, and you're not going to actually engage people because they see it as something that's out there that it doesn't actually belong to them, and they're the ones who actually, like myself—I’m the one who has to live with the rheumatoid arthritis and go through all of the conditions and the issues like that.

I lived through the experience of caring for my late husband and that kind of thing. So I’m the one who's at this sharp end. And so—and there are millions like me out there, whether, you know, across the UK. It's our lives.

Mark: Yeah. And everyone has a story to tell. 

So you might be wondering why we have these two wonderful guests on our show, and we'll hear a bit more about their roles specifically as we go through. But they play a really important part in ADR UK, particularly the ADR Wales partnership, as we'll get to.

So, linking up datasets that are held in the Welsh Government resources like the SAIL Databank, which is a way of linking datasets across health, social care, and socioeconomic datasets that we have access to and then feeding them back to researchers who might be able to make the most of these datasets to try and make a real-world difference.

But before we try and tease apart that and that particular reason, we just want to ask our guests one quick question to try and get to know them a little bit better. So just something a little bit fun that we're asking everyone: what is your favorite statistic? So, Tracey, would you like to go first?

Tracey: I've got quite a personal favourite statistic, actually, which is... 90 out of 100 women with breast cancer will survive for 5 or more years. And that's my favourite statistic because six years ago I happened to have breast cancer and go through treatment for that. And I just think that's a brilliantly reassuring statistic. So that's why I would choose that one.

Mark: That's a really good one. I really like that you shared that. Thank you.

Dot: Can I just say thank you for sharing that, because I'm just about to start my journey on that way.

Tracey: Oh!

Dot: So that is reassuring. Thank you.

Tracey: Well, maybe we'll hook up, Dot, after this.

Dot: Absolutely. My favourite one is totally off-piste.

In 2022, the University of Derby and Butterfly Conservation did some research, and they showed that counting butterflies reduces people's anxiety by 9%, which I think is wonderful. So we should all be out counting butterflies.

Mark: I like that one as well. And maybe this because I've not got anything on Sunday, I've got free days, so maybe this is what I should be doing, although it's probably at the wrong part of the year for butterfly counting.

Shayda: Wonderful. Thank you both, and thank you both for sharing something so personal on the podcast. And good luck with your journey, Dot, and very pleased to hear how successful yours has been, Tracey.

Right, now to jump into the meat of the episode. I'm gonna start with you, Dot, if that's okay.

So you, much like many of our listeners, are a user of the health and care system. But you've also been working closely with the SAIL Databank for some time now, so you also have a deeper understanding of how data can be used to support public services.

From your perspective, what do you think are the challenges that face users of the Welsh health and care system, but maybe also just health and care systems generally?

Dot: I think from my various iterations, whether it's as a social worker or as a service user myself, is knowing the pathways, knowing where to start, how to get into those pathways. And this is where more information is actually really important for the layperson.

So that's why I'm glad that we're talking in layperson's terms today. We're not using the technical jargon. Because if you go to a GP appointment or a more specialist appointment, suddenly they're talking a language that a person may not understand, and it can be quite scary. And I think if people are made aware of how important gathering information and data is, how it makes a difference to the individual, and how it can make a difference to other people's journeys, that is really important.

Now, another example from personal experience is that I am going tomorrow to a specialist breast care center.

Now, that was established as a result of people's experiences of being pushed from pillar to post and the whole information that—for women who are going through this—well, I say women, it can be men. The journey, it's nice to have it all in one place. So it's the data taken from people's lived experiences that is shaping the services that I'm accessing now.

Mark: And Tracey, having listened to Dot, and as someone from the Welsh Government who is involved in responding to the challenges Dot’s outlined, but also a much broader range of challenges on top of that. 

The same question, what do you think are the key issues? And are they similar to what Dot has highlighted, which I think is a very good point around complexity of care, accessing care - but what other additional concerns do you have that are really a priority for the Welsh Government at the minute?

Tracey: I think, Dot, that's a brilliant example of the importance of having kind of one stop shops almost that kind of take away all the complexity for the patient, if you like, and just hides the wiring, so that you, as a patient, can go along and have all of the diagnostic tests and results and everything in one place. And I think that's probably the vision. 

It's really interesting that you've used that example of the breast unit, because that's quite a new development. I certainly didn't have that. My own experience was that I would have to go to 2 or 3 different places. And so it's brilliant to see that. You know that that sort of one stop shop is starting to be a reality for people, and I think it's great. 

So I think Mark, in terms of the wider challenges. I mean, they're quite considerable, really, aren't they? And it's not just in Wales that we're facing these. So we know we've got an ageing population, and I think the added difficulty for us in Wales is the kind of socioeconomic circumstances of Wales, you know, in terms of - we've got quite high levels of poverty which obviously impact on people's health and wellbeing. So I think we've got an added set of complexities there which would be similar, perhaps, to the northeast of England and some communities in England. But I think we've got more of it in Wales. 

So it's definitely that ageing population, and no doubt we'll come on to this, but we also know that that's going to result in increasing demand for healthcare services from the science evidence and advice report that you mentioned earlier. We know that we're going to be facing increasing demand, and also that the demand that's coming through the door is going to be increasingly complex because you'll have people older people who have lots of different conditions. So that's really quite challenging in the kind of tight budget context and for service planning there, where perhaps we've had service planning which has been on a specific condition basis, whereas now we'll have to have services that can deal with. I think the word is comorbidities, but it just means someone with lots of different health conditions.

Mark: Yeah, it's both a success of healthcare that we're able to allow people to live with conditions much longer.

And also this problem that it's created is that you have people with as and increasing numbers of morbidities. So morbidities being conditions to our as a more lay friendly term. So things like cardiovascular disease or lung cancer, for example, it creates a different challenge. And one that we don't always have our heads around, because we don't know how to treat combinations of diseases. I don't know how you how you plan for all of this. I'm quite glad I don't have to try and plan for all of this.

Tracey: Yeah, I mean, I think that's where understanding what that looks like is so important. So we knew from the the report that you mentioned at the outset. I think one of the lines in there says that you know there'll be an increase of people with 2 or more conditions, and that people with 4 or more complex conditions is expected to double by 2035. I mean, there was some quite stark statistics and data in there. What we've done is look at the report as a whole, and there's a lot more in there, as people will have read, no doubt. Which also has allowed us to look at the conditions themselves. So there are some conditions that are likely to increase faster in terms of what we perhaps would have expected. So things like dementia, heart disease, you know, hypertension, anxiety disorders, so mental health conditions, diabetes. 

So it helped us to understand the nature of those conditions, and then to also understand how we could look at the prevention. Because a lot of those are preventative if we do some work upstream. So it was a really important report for us, because it gave us this body of evidence, along with other wider national and international evidence that as a policy group within government we were able to look at and think, right, how do we need to now look again at the policy actions that we've got planned to respond to the evidence coming out of that report. And that's what we've been doing, really, for the last 10 months or so.

Shayda: I'm really glad that in addition to highlighting the sort of issues that have that people are facing with health and wellbeing, that the data is uncovered, that also there is a plan to address these issues with preventative measures and looking for solutions. And as we know from how Welsh government works with the SAIL consumer panel that we need different heads, different levels of expertise involved in creating solutions, so it would be really great to learn a little bit more about how Welsh Government works with researchers on finding solutions, and also to hear from Dot about how the SAIL consumer panel has been working with researchers as well. So I'll take it to you first, Tracey.

Tracey: Yeah. I mean, we are incredibly lucky to have the kind of SAIL database in Swansea University and working really closely with researchers and academics from there on a fairly regular basis across government.

I was looking at an example recently, actually, and it links to the prevention discussion we were just having, and about intervening upstream that I think really brings this to life, really. So we've got a service in Wales called Care and Repair Cymru. And it's basically a housing support service. And the records from Care and Repair Cymru have been deposited in the in the kind of SAIL database and from the analysis of the data from that we were basically able to assess the kind of risk around care home admissions for almost a hundred thousand service users, all with different levels of frailty, by looking at the longitudinal data in there against a control group who'd not received any support from the likes of Care and Repair Cymru.

And what that showed was that that organisation was really successful in preventing care home admissions for moderately and severely frail people. So that was really powerful data and evidence that could then inform a decision to protect the funding for Care and Repair Cymru, and really compelling evidence.

Then that means that we're preventing admissions to care homes and hospitals which would be far more expensive than increasing the funding to the likes of Care and Repair. So I thought that was a really powerful and compelling example of how you know using the SAIL database, can help us in making those decisions in a very evidence based way. Hope that's helpful.

Shayda: Yeah, extremely helpful. And a great real world example of how data was used to save a service and help people. 

Dot, you work a lot with researchers via the consumer panel, possibly in your work with the Butterfly Conservation as well, but specifically around the consumer panel. What's your relationship like with researchers? And what advice could you give to researchers who are looking to do more public engagement?

Dot: I think, over the... gosh, nearly 13 years now since the panel has been in existence, researchers have grown to respect our perspective more because we are often talking from lived experiences. Either our personal lived experiences or family members' lived experiences. And some of us actually worked in health and social care as well. 

The whole issue now is educating the new researchers coming along about listening to people like myself, because you may not want to hear this, researchers, but sometimes researchers don't seem to live in the real world. They seem to be almost wanting to do research for research's sake rather than looking for research that is going to impact people's lives and make a difference in the future.

As I said, I'm on the Information Governance Review Panel as well. So there's a small group of people that make... somebody from Welsh Government, somebody from the Health Board, various other people on there. My voice is equally as important as everybody else's voice on there, and I will look at something that has passed by our health colleagues because they just accept it. They accept the language and things like that, whereas I can go in and say, "Well, what does this actually mean? Have you actually spoken to somebody who's going through this?"

It is really, really important that we are listened to. As I said, over the years, researchers have come to us more and more. We actually get people wanting to do some research using the SAIL database actually ask to come to present to the panel because they want our input. They want our perspective on shaping the research question sometimes, because they've got it in their own head, but there's something in their head telling them, "Is this going to make sense to people?" So that's where we actually have a really important role, I think. And equally, I think the same with Welsh Government. Welsh Government is pretty good at asking the end user as well. So it's not just about the researchers, it is about Welsh Government as well.

Tracey: Yeah, I think, Dot, I completely agree with that. I mean, before I was in this role, actually, I was the Deputy Director for Mental Health and Substance Misuse, and like most policy areas in Welsh Government, you know, we're really committed to having a kind of lived experience voice in as early as possible, really in the kind of policy process. 

And I know certainly in those areas, it was absolutely invaluable to have people with lived experience help us, as we kind of, you know, shape policy proposals, strategies, whatever we were doing. And what we did have to do, though—we always do have to do particularly when dealing with people who are, you know, in the midst of, you know, grappling with substance misuse, for example—is put the right support mechanisms in place so that people can properly engage. Because we have to make things easy, I think, for people to be able to engage with the process, or as easy as we can. But it's always better policy if it's being informed by the end user, I completely agree, because otherwise we'll just develop brilliant words, and they won't be able to be delivered or they won't be successful.

Dot: But it's also important to recognize that maybe the SAIL panel is just a snapshot of a few people, and it won't be the same lived experience for everybody. We cannot speak for absolutely everybody. We can speak from our own experience and our experience of working with researchers and things like that. But, you know, it does have some limitations. But it is important to have it there.

Mark: I would encourage anyone really to take your ideas and your thoughts about research projects to as many people with lived experience as possible, because from my own experience, the insights you get are just so powerful and so important.
 
Now, we are a data podcast, so to kind of bring things back around to that, and I'm kind of aware that Producer Chris is probably giving me the evils off-camera about not starting a turf war with our kind of equivalent organisation, HDR UK, who do the health data side of things. But could we talk a bit about the sort of data that's available? 

So, Tracey, what types of data do the Welsh Government collect, and in particular, thinking about datasets that can be linked to health data that can make them really powerful? 

Tracey: As you say, data is absolutely essential, really, in kind of evidence-based policymaking. And, you know, we rely on a mixture of sources. So, we'll have things in each policy area where you may have commissioned specific research to inform and data sources. And then we've also got access to things like, you know, the National Survey, for example, and Public Health Wales surveys, and those sorts of information sources which we can look at alongside more specialist or bespoke data that we look at. 

So yeah, I mean, as you say, that's an ongoing process, really, in each of the policy areas within government. But certainly, as someone who really has the responsibility for A Healthier Wales, which, as you said at the outset, is our 10-year health and social care strategy for Wales, it was really important, just at the end of last year, that we took stock of what the up-to-date picture looked like in terms of information, resources, and evidence that was out there. Because there are four years left of A Healthier Wales, and ministers, absolutely understandably, are really keen that we focus on the delivery of that strategy. 

And so it was really important to look at all of those evidence sources at the end of last year, and the SEA Report was absolutely pivotal in that. To see how we needed to change some of the policy actions. So an example would be around digital, for example. So the policy action that we've got in A Healthier Wales around digital and the provision of, you know, all sorts of innovation and digital services has been significantly strengthened because it was clear from the information coming through that if we are going to realize the vision of having more community-based care, more people remaining at home and having care at home, you know, digital has got a massive role to play in achieving that. So, you know, that’s just an example of where, right across the health and social care actions, we looked at the SEA Report and, you know, made different decisions about different areas. 

So that's the kind of thing. And all of that has come from the data. It’s come from the data that’s come through from the likes of the SEA Report and others.

Shayda: Thanks, Tracey. It’s very encouraging to hear the response to the evidence. 

I’d like to ask a question to you, Dot, casting your mind back to before you joined the consumer panel. Were you surprised by how this data is used for research, for instance, the data that's collected from your GP or your employer being used for more than just health services or employment, but can be used for real-world outcomes?

Dot: Absolutely. And I think that’s one of the big issues, is that most people are totally unaware of. But that's what's actually happening, that, you know, each visit you go to the GP or whatever, there's something being recorded, and that’s being fed into a system. But then that system is actually being used to shape services and policy and things like that to help people in the future. So, I think there’s a big campaign needed to actually inform people as to what's actually happening because, as far as they’re concerned, you know, you go to the GP, they write your prescription or whatever, and that’s it. They don’t realise that that information goes elsewhere, and what elements are captured, and how that information is actually captured alongside maybe your postcode and various other things, so it can build up a whole picture, not just of your health, but of your wellbeing, your socioeconomic elements, and that. And without all of that joined-up thinking, it’s very difficult to actually shape how services are going to be developed. 

But for me, it’s about that informing people, and informing them in a positive way, because there was a big fuss in England, wasn’t there, a few years ago about storing data, and those of us in the SAIL Databank would sort of say, well, why? Because, you know, we understand it’s all secure and anonymised. People were afraid of it being used for nefarious purposes, I guess, but without it, we wouldn’t have the services that we have now. We wouldn’t have this wonderful new breast clinic. We’d still be going from pillar to post around different hospitals, different places like that. So, to give people some real-life examples would actually be a benefit, I think: "without this, we wouldn’t have had this".

Shayda: I think that was beautifully put, and I actually put in my notes that I reflected on the breast cancer clinic as well, because it’s a really great example of how, Tracey, when you were going through this, the data you had to do your own administration.

What I imagine is, the GP wasn’t talking to the hospital, wasn’t talking to the specialist because the data was being collected separately and not connected, whereas for you, Dot, now, the data is being linked together into one sort of master dataset. And that’s the sort of business that we’re in at the moment, is sort of gathering these individual data sets, you know, and handling them responsibly and bringing them together to form a full picture.

And with that, I want to say thank you to both of you. Another fascinating conversation. It’s been great having you both on. And the way that we typically end the podcast is we like to ask our guests what the point of all of this is. 

So, if we could just sum up what we’ve been discussing, what it all means, and how to make lives better. Can I start with you, Tracey? Just a couple of lines: What changes would you like to see with the health and care system, and what would benefit patients the most?

Tracey: Yeah, I mean, you know, we’re really keen, really, to focus on, as Dot said, you know, we need to have a focus on the patient and the individual person. And so certainly, for us, having - through ADR Wales, and other sources - greater understanding of inequalities that exist, and looking at that through an intersectional lens, so that we can properly understand how we provide services, then that fits around and the needs of different groups, I think, and so that we don’t have a kind of one-size-fits-all because that doesn’t reach certain underrepresented groups in particular.
 
So I think doing some more work in that area will really help us as we take forward A Healthier Wales.

Shayda: Brilliant. Thank you both so much.

So Mark, what were some strong themes that came out of that conversation for you?

Mark: Yeah, for me, I think it’s that there’s still a lot of work to be done in understanding the baseline of what are the issues facing today and identifying those gaps that data can contribute to. And also making sure that we embed the lived experiences of the communities who are facing many of the issues that we’re studying or researching or trying to solve, If we’re going to be able to make meaningful and valuable decisions that will hopefully benefit the health of everyone.

Shayda: Well, that's it from us today. Thank you again to our guests, Tracey and Dot, and thank you for listening.

Mark: Until next time, stay curious about how your everyday data might shape society.

How can co-producing research with historically excluded groups drive impact? In Northern Ireland, a unique partnership between the charity Voice of Young People in Care (VOYPIC) and ADRC NI (Administrative Data Research Centre Northern Ireland) has placed care experienced young people at the heart of research about their lives. These young people have shaped the research by defining priorities, providing feedback, and translating findings into engaging resources.

Guests Brenda Kilpatrick, Engagement Development Worker at VOYPIC, and Elizabeth Nelson, Public Engagement, Communications and Impact Manager at ADRC NI, share how this approach has amplified the voices of care experienced young people while improving the ethical and practical value of research. By involving those directly affected, the collaboration has set a new standard for inclusivity, trustworthiness, and accountability in data-driven decision-making.

This story of co-production offers important lessons for researchers, policymakers, and communities, showing how consulting historically excluded groups can lead to higher quality research and more meaningful outcomes for everyone.


Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

For information on the partnership with VOYPIC and ADRC NI, visit https://www.adruk.org/news-publications/news-blogs/involving-historically-excluded-groups-how-were-co-producing-data-driven-research-with-care-experienced-young-people/.

Find out about VOYPIC's work: https://www.voypic.org/

Read a blog from Liz on the collaboration: https://www.adruk.org/news-publications/news-blogs/embedding-co-production-in-data-research-how-internships-can-contribute/

Explore the young person's guide to co-production: https://www.adruk.org/news-publications/publications-reports/a-young-persons-guide-for-researchers-co-producing-data-research-with-under-served-groups/

Discover the public dialogue between ADR UK and Office for Statistics Regulation: https://www.adruk.org/learning-hub/skills-and-resources-to-use-administrative-data/public-engagement-in-practice/lessons-learned-from-a-uk-wide-public-dialogue/

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Shayda: Today's episode is about how we co-produce data-driven research with historically excluded groups. Gosh, what a mouthful! But it's a topic close to my heart and something I regularly support ADR UK researchers with.

Now, I think we need a "jargon klaxon" at this point, as there are some unfamiliar terms for our listeners. Mark, what do we mean by co-production?

Mark: Well, academics love to give big, fancy words to what we do. So, "co" — you stick "co" in front of a word, and it kind of means working together. Just don’t ask me what the Latin root for that is. For me, what we’re really talking about with co-production is getting researchers, community groups, stakeholders, policymakers, and the public — and even more than just those groups — to work together.

Importantly, it’s about working together with equal power to create research that is meaningful and benefits everyone. So everyone’s views are taken on board and treated as equally important, rather than just researchers doing work based on their own thoughts or beliefs, which might not always be insightful or well-aligned.

Shayda: Exactly. It sounds tricky balancing the power dynamic, but it can be done. I think it can be easy to imagine how researchers who analyse administrative data might work with policymakers. Policymakers need evidence to make important decisions, and researchers use data to create evidence.

But for some people, but not listeners of this podcast, of course, it might be less obvious to understand how or why researchers — who often work with numbers — might want to work with communities or members of the public, or how researchers and the public can work together.

But as we’ve learned from our guests on this show, experts come in all shapes and sizes, and we’re all experts in our own lives, our jobs, how we interact with society. That’s truly valuable information.

For administrative data, without us, there would be no data. So, it’s important that we, as the public, are represented in research that uses public data.

In this episode, we’ll be exploring co-production with historically excluded groups — groups of people who, over time, have not been included or have been denied access to full rights or opportunities.

Mark: Yeah, I think that’s really important. If I were to quote the great philosopher, Homer J. Simpson: “I’m a white male, aged 18 to 49. Everyone listens to me, no matter how dumb my suggestions are.”

I think that really gets to the essence of what we’re talking about in this episode. We need to talk to as many people as possible if we’re going to do research that is impactful and meaningful.

Not everyone is the same, and we might fall into traps if we apply data insights about one population group to another. If anyone has read the book Invisible Women, you start to see how much research in the past was based on the views of a minority of people and then applied to everyone as if it would magically work.

That’s why it’s important that we spend extra time talking to those groups that researchers have ignored, to get their thoughts on what we’re doing today.

Shayda: Invisible Women is a really powerful example. It makes me wonder if we should consider a side project hosting a data book club.

But for now, we’re joined by guests from Northern Ireland, which wraps up our tour of examples of work across the different ADR UK partnerships. So far, we’ve learned how charities, practitioners, and public panel members can work with data scientists to ensure their research improves people’s lives.

In today’s episode, we’ll hear an example of how data scientists from the Administrative Data Research Centre Northern Ireland partnered with a dedicated group of care-experienced young people, known as the Data Research Advisory Group, from the charity Voice of Young People in Care, to shape research from start to finish.

Mark: I think in honour of today’s theme, we should call this a “co-podcast” because it’s not just the two of us — we’re doing it with two wonderful guests who will help us create this hopefully wonderful episode.

So, we have Brenda Kilpatrick, who is the Engagement Development Worker at Voice of Young People in Care, and Liz Nelson, who is the Public Engagement, Communications, and Impact Manager at the Administrative Data Research Centre Northern Ireland.

Welcome to the show, both of you.

Brenda: Thank you.

Liz: Thank you!

Shayda: We’d like each of you to introduce yourselves to our audience. Please tell us a little bit about who you are, what you do, how you got here—and no technical jargon. Brenda, let’s start with you.

Brenda: Yeah, so, we’re the charity for children with lived experience of care in Northern Ireland.

We work together with children and young adults to create a better care experience and improve life both in care and after care. We do this in a number of ways: through our advocacy and awareness-raising, by making connections, and through capacity-building initiatives. This includes our independent advocacy service, youth participation efforts, and co-production projects like this one. Our aim is to influence change through our policy advocacy.

Personally, I’m a care-experienced adult, so working for Voice of Young People in Care is something I’m very passionate about and have always wanted to do. Ensuring that young people and their voices are represented is very important to me and to our organisation.

The chance to be involved in groups and partnerships like this, which really put young people at the heart of decisions affecting their lives and research that is relevant to them, is something I’m very passionate about. I believe this approach not only enhances the overall impact of the research but also positively impacts their lives after care.

Shayda: Thanks, Brenda. I think it’s incredible how you use your lived experience to help others in care thrive. Liz, what about you?

Liz: Hi! I’m Liz. I came to this from a very long way away—we may as well get my accent out of the way. I’m from the States originally, and I’ve lived in Northern Ireland for 15 years now. Much of that time, I’ve been working with ADRC NI, the Administrative Data Research Centre Northern Ireland.

I started out over here working with young people, so this project really feels like coming full circle for me. I began as a youth worker, doing participatory research with young people through a charity called Public Achievement, and then made my way, through twists and turns, over to the data side of things.

While I consider myself a bit of a data nerd, I don’t actually work directly with the data itself—I’m not a researcher. My job, as I see it, is to find ways to talk to people and communities about data, how it’s used, and how they can get involved.

In some ways, I think there’s a strength in not being the person who knows how to run all the methods, models, and technical aspects of the data. It allows me to look at things from a different perspective. I love doing that, and I love working directly with communities.

So, when the opportunity came up to go back to working with young people, it’s been really exciting for me.

Shayda: I completely agree. There’s a lot of power in having people in the room who can offer different perspectives, and it’s fun to work together on that. For the listeners: Liz and I work on some projects together, so it’s great to have her on.

Mark: Super. We just want to ask you a few introductory questions to get to know you better. These are questions we’re asking most of our guests. The first one: is it day-ta or dah-ta?

Liz: Ha! Here's where the accent thing comes in. You go first Brenda.

Brenda: I’m just trying to think how I actually say it… like “Data Research Advisory Group.” So for me, it’s “dah-ta.”

Liz: I think I'd go "day-ta", but honestly, I’ve lived here so long I can’t even remember how I used to say it. It might’ve been “day-ta,” or maybe “dah-ta.” I know I used to say “ree-search” instead of “re-search” and “proh-ject” instead of “pro-ject.” So I don’t know. But I’ll go with “day-ta.”

Mark: I didn't know there was a "re-search" version, maybe for season 2 we'll start...

Liz: "Re-search" would be more here, but in the US we lean heavily on other syllables, so it's "ree-search".

Shayda: All right, another important question: pie chart or fruit pie?

Liz: Fruit pie. You guys don’t eat enough pie over here, and you don’t do cherry pie at all—which is an absolute travesty. You’re missing out massively.

Brenda: We’re going dessert? Fruit pie, then.

Mark: That’s the right answer, yes.

And finally, what’s your favourite statistic?

Liz: My mom was a public librarian when I was growing up, so I basically grew up in the library. This was the ’90s, and childcare wasn’t much of a thing.

The U.S. has more libraries than branches of McDonald’s. I’m very proud of that.

Brenda: Surprising!

Liz: I know, right? Although, on the flip side, I also discovered that we spend more money on salty snacks than we do on public libraries. But let’s just forget that part, okay?

Brenda: My favourite stat is that 11% of the world are left-handed. As a fellow lefty, that's my favourite stat.

Liz: I didn’t know that.

Brenda: Actually, it says that between 10% and 12% of the world's population is left-handed. So I think, it's definitely 11.

Shayda: So to jump into today’s episode, one challenge some researchers face when involving members of the public in their work, especially for the first time, is how to build that initial relationship. Liz, can you speak a bit about how your research team connected with Voice of Young People in Care (VOYPIC) and what came out of that relationship?

Liz: To start, this wasn’t something we initially set out to do. It grew.

I was trying to find people to join the project’s steering committee. Our goal was to ensure each project has community representation alongside policymakers and data custodians to advise, provide feedback, and help steer the research direction. I had worked years ago with Koulla Yiasouma, the Northern Ireland Children’s Commissioner at the time. I reached out to her to get her involved and get a sense of which organisations might be interested in this kind of work. I'd comes from youth work but it had been a number of years.

Koulla pointed me toward VOYPIC, which led me to connect with Alicia. Again at the time, it was just about discussing the research objectives, it was a different wave of research too, but we started talking about what the research was interested in discovering and whether that would be useful to them, we came to this mutual understanding that we should talk to young people about what this means for them because it's their experiences, they're the ones coming out of cares and looking for accommodation, we're talking about homelessness and challenges that face young people as they age out of care. It grew from that.

Unfortunately, COVID delayed our plans, so the original plan of holding it in 2020 was postponed, but we took it from there. We started talking to Lee first, then Brenda, on how to go about this. 

The great thing about partnering with an organisation who knows the group is you don't have to start from scratch, you're coming in at a point where there's already trust between the young people and the organisation. We developed a relationship first with VOYPIC. I think that part was really important, for you to get to know us, and us to get to know you, and for you to vet us.

Brenda: It absolutely was. Those initial meetings allowed us to align our expectations and build a relationship between our organisations before involving the young people. And obviously that went really well. 

Liz: I think it helps the researchers' confidence as well. You're not just jumping straight into working with the community, you're getting on the same page first and making sure everyone is pulling in the same direction.

Brenda: Yeah. And I think the thing about getting started, and again, from your perspective, you can let me know what you think, you have done the youth work thing before, so maybe not for yourself. But I know getting started, maybe with Aideen and Sarah and other people from ADR, they were daunted about working with young people. And some of us in the room were a bit daunted about working with researchers and working with data.

So, you're both going in kind of not really sure and trying to feel each other out. And the young people did have this: "research and academia is just so not something that I could ever aspire to be involved in", and really breaking down that barrier was so important. And I think from your guys' end, it’s that it’s very daunting to come in and talk to a group of young people, who are very sure of their experience, very knowledgeable about their experience. And very sure of what they do want, but also very sure of what they don’t want. And that can be daunting as well.

So I think it was really, really useful to have those initial conversations and build that relationship initially, so that we were walking into that kind of all feeling you're going in on a level playing field. There's something from each side that everyone's wanting to get out of it.

It is a relationship, and everybody has been fantastic. The young people have such a great relationship with you guys, you can see that in the work that's come out of it, the internships out of it, and the fact we're here three years down the line. Some young people have moved on and can't be part of the next phase, but they want to be seniors for the new young people coming on board. They love the group. It has been a journey, and there have been things along the way, but it's been fantastic and it's that initial thing of: we're all in this together.

Shayda: You've both touched on something really important there, which is how the core of relationship building is transparency and building trust.

And it's so true that when you are interacting with a person that comes from a background that is very different to you, it can feel intimidating even in a social setting, and so to be doing that in a professional setting can be hard to envision how someone so different to me wants to listen to me, or why they want to interact with me in the first place. And what do they want out of this?

Being really transparent about the reasons you're there, the aims and what you hope to get out of it is really important and I'm so glad to hear that the relationship has been so strong.

On that note, Liz, if I could turn to you—how did this approach differ from traditional research methods? And, Brenda, you touched on how your care experience has really brought value and feelings of empowerment in the work that you do. Can you also tell us a little bit about why this partnership was so important to VOYPIC?

So, Liz, we'll go with you first.

Liz: The first thing right off the bat that I think of is is that the difference here is that the researchers were having direct contact with the people that they're researching. The people behind the data.

There's a lot of qualitative methods that would inform this type of work, and it would be much more common, I think, within, say, health spheres. 

But it's not something we typically associate with data research.

It's big data sets. It's numbers, it's statistics. It's words that I don't understand, like regression modelling, and rarely, I think, do they get the chance to actually talk to the people behind that. It's asking researchers to look at a different type of knowledge than what they can gain by looking at data.

And it's asking them to put that knowledge and that experience at the same level as their own knowledge. 

Shayda: Thank you. And Brenda. What did it mean to you to have VOYPIC involved in research? 

Brenda: It's something that the organisation has historically been involved in and through different projects and we haven't been involved before with administrative data research and that type of partnership. And you know the the mission and the aim of VOYPIC is that all children and young people with a lived experience of care have a good experience when they're in care and that they go on to thrive into adulthood.

And that you know that really, that their experience of care doesn't make their outcomes any different from any other young person who hasn't grown up in care.

So being involved in a project that is looking at the outcomes you know, the health outcomes and the mental health outcomes, and you know the the different things that we've looked at throughout the project, and seeing that if young people have had contact with social services, how they do have different outcomes from the general population. 

VOYPIC just wants to be at the heart of discussions around improving the outcomes and impact for children and young people with care experience.

Lee, who's the Engagement Manager at VOYPIC, always likes to talk about: "The data gives the outline, but using people with lived experience, it colours it in and it brings it to life."

Mark: I mean, that's really important point. So just to pick up a bit about what you said, Brenda. I think one of the hardest parts of co-production is ensuring this equal power dynamic is, you know, it's shared across both researchers and the people that we're engaging with. 

And you've talked so far about, it is quite daunting, but you knew the importance of breaking down barriers, being insistent about making sure that voices are at the centre of a decision. So could you say a little bit more about how you ensured that young people's voices were meaningfully heard in the decision-making process around the research project?

Brenda: Initially, we all came together and talked about what the goal was. And I think during that initial meeting, talking to the young people and seeing where they wanted to go with it, and what they wanted to get from it kind of took it slightly in a different slant. And that was brilliant because one of the things that the young people in this particular group are very insistent on is sometimes the the data and the research can paint a more negative picture, and they want to focus on the positives, and make sure: yes, we're not going to shy away from some of the data that can be perceived as negative or challenging, but there are positives there, and with the right support, the right interventions, young people can go on and have the same outcomes. 

One thing about you know their voice, and being meaningfully involved, the goal of co-production is equal power sharing. But it's not always the case that that can happen a hundred percent of the time. So, for example, the young people were talking about, you know, wanting to see a dataset. And that's just not something that's possible.

The thing about specifically for young people with care experience, they grow up in a very adult world. Decisions are made for them and about them without consulting them a lot of the time. So for our young people, and something that we are very strong on, is managing expectations and keeping them informed.

So it is fine to say that is not possible. It is better to let them know and have the discussion that that is not possible, as opposed to just skirting over that and just saying, "Oh, no! Well, that can't happen." Just give an explanation. 

One young person was really eager to see a dataset. So it was like, "that's not possible. You know, there is training and stuff that has to happen for you to be able to do that, but we can show you a sample one". 

And just listening to them and taking their opinion on board. And you know that did come with wanting to make sure that the more positive things were involved each time. There is a lot of stigma associated with being care experienced. And sometimes statistics can just be headline grabbing, and people can just see that and run with it. They're like, "this is about us. This is about our lives."

Liz: That is such a good example, as well of the importance of having lived experience within these research projects, the shift that that can then make from people feeling like they're just numbers, and just like points in a dataset to being a part of that. 

And the phrase that always comes up, "nothing about us without us", without that input from the young people and saying, "we want this to be about the positive aspects of our lives", you know, the research that we're talking about here is around outcomes. I can't even remember what it was called beforehand, because the young people got in and helped us shift and change this way before the research even started, so it's always been known as positive trajectories for care leavers. 

And before that it was coming from this place of: "We need to understand negative outcomes so that we can prevent them". But that's not what the people who are actually going to be impacted by the research, the people whose lives are supposed to be improved by finding this evidence and bringing it into policy and service provision, that's not how they want to frame it. 

And that makes total sense, doesn't it? Because if you bring that negatively focused evidence to a policymaker, everything's going to go with that lens. If you have the people right there saying to you, "That's not what's going to make a difference. That's not what's going to make me feel like I'm a part of this." It's our duty to listen to that.

I think, as well, you know, you're talking about managing expectations. That was one of the things that we were the most worried about working with data. As we all know, it takes a long time to get datasets. And sometimes you think you're going to get something, and then it doesn't happen. And there were multiple times when we were like, "how are we going to explain this? What are we going to say to the young people? We don't have the data. We thought we would, or they really want to ask this question, and we can't". we just defaulted every time to "well, we just have to tell them this is how this is and say, this is our suggested workaround. Do you guys like that? Do you want to do something completely different? Here's all the options we can think of". Letting them lead wherever possible. 

Mark: What I'm hearing is that there's been a lot of benefits from this partnership and working together.

And when I was doing my notes for today's episode, one of the things that really stuck out to me was how the young people in the Data Research Advisory Group helped translate academic work into accessible content.

So I was wondering whether you could tell us a bit more about how this relationship helped to make content more relatable, and what this teaches researchers about effective communication.

Liz: So this is one of my favourite moments, one of the young people in one of the early sessions, I think, turned around and, completely unprompted, said, "See if I'd have known that it was going to be this, I would have come, but see if I had just gone by that flyer that you handed around, I would not have come, and I would have missed all of this. You made it sound so boring."

And I as the comms person, I'm sitting there going, "Oh, dear, I have some work to do", which is when I turned around to her and said, "Okay, do you want to come and teach us how to do that?"  And that was actually the first moment, the spark of what became the internship. The difference that that has made for the way that we approach, how we talk about our research, the way that we put it on our social media, the way that we put it in blogs, everything. I am delighted to admit that I frequently go back to the young person's version of a paper, the young person's guide to co-production, all of the young person's versions of things, and look at the way that they have taken something really complex, and distilled it down into something that makes sense, not just for young people, but for anybody who's not steeped in that language of data.

Brenda: I think, Liz, as well. You saying just you know about that and that leaflet. I think that shows the benefit of working with a partner organisation. Because if that had just been advertised on its own and you didn't have a partner organisation going: "look, ignore that. Come on ahead. We kind of know what it's about. We'll get once we're in the room and we talk about it. Come along to the introductory session. See what you think, and we'll take it from there."

In terms of the the young person's version, and you know that type of language, what's really brilliant - I don't understand the whole world of you know, research and data and all of that - but having the things that they were working on, they had the researcher who had written it, or who was very involved in the project, in the room. 

So you have the case of maybe, if there's a bit of a lack of understanding of what that means. You have Sarah and yourselves are going, "No, no, it's trying to say this", and them going, "Oh, no. Well, then, I wouldn't say it that way. I would say it this way, if that's what you're trying to get across."

As you said, yes, they are young person's versions, but it does just make research and data accessible more to the general public. And people who aren't in that world.

Shayda: Absolutely, and the young person's version of a paper actually inspired the ADR England partnership to develop their own young person's version of a paper this summer with a young intern. So we've really taken the lessons from this wonderful example. This is where speaking to the young people can be truly valuable. 

And, Liz, we definitely heard about how this engagement shaped some of the work that Administrative Data Research Centre Northern Ireland then went on to do. And the broader ADR UK partnership, but Brenda, can you speak a little bit more about how the young people felt when they took part? And what were some like specific examples of particular things that you thought really benefited them in engaging with the researchers in this way?

Brenda: I think two really obvious specific outcomes are the two internships that were provided for two young people over the two summers, and they were just fantastic in giving the young people an insight into working in the field of administrative data research. And that was something that I know definitely, the group is now made up of four young people who have been there from the very first workshop, and haven't missed any of the workshops, and it was something that they would not have thought themselves capable of going into it.

I think something that they have all talked about is not seeing research and data as something that is unattainable. A lot of our young people, they're involved in these type of groups because they want to make care in Northern Ireland better for young people coming into care behind them.

And I think they really see the benefit of this group. They learn about the data that's there, with young people, with social services involvement and how that will have an impact and does have an impact in later life, and they want to be involved in showing that positive trajectory and how that's possible with support and intervention.

A specific example is their involvement and their commitment. They're still all involved two years later. Two of them went on to do an internship.

One is now in university doing psychology, and is really interested in the research, that was something that she didn't see possible for herself when she first went into this group. So there's some really amazing outcomes for them specifically, but also, I think, will have an impact on the care experienced community in Northern Ireland as a whole, because they're involved in this project, and they're involved in shaping the research and the data about their lives and the lives of other young people in care.

Mark: And that's that's really, really good to hear that there's been a very reciprocal relationship that everyone has benefited and everyone's learned from each other.

I have one final question from this kind of segment, and I think it's a really important thing to discuss.

So, working with historically excluded groups often means dealing with difficult subjects. Obviously, in particular in this example, talking about care experiences. But often we could be talking about difficult subjects like mental health.

How do you create a supportive environment that addresses these sensitive topics and treats them respectfully?

Brenda: So what we would do is we meet together initially and talk through the workshop. I would then link in with the young people. Where we haven't said that, you know we we might just due to something that's going on in one of their lives might change a workshop, I will contact them, give them kind of a rough agenda of what's gonna be covered. "Is there anything that you're concerned about, or anything that you want to chat about before we go into the workshop?" And where that's the case, we do that.

The beginning of the workshops. We kind of say, you know, "guys, if you know, you need to step out or you need to take a few minutes, you know. Just give me a nod, and you can do that. I will be out with you and have a chat with you about that."

We kind of then have a bit of a debrief when it's over. We have a bit of a chat and see how everybody is. And again, then we would link in with the young people in between workshops to see, was there anything that come up that they need support with or want to talk through? It can be quite, you know, intensive if there is something that has triggered, or there's something that has come up.

But we value and the young people value outcomes from this work so much that it is important to make sure that we give that time.

Liz: We would not have attempted to work directly with care experienced young people without VOYPIC, and that's one of the biggest reasons, we know that the subject matter of the research can be really sensitive. This is one of those places where this is their lead, and we follow it.

Shayda: Yeah, completely agree. And it's the approach that I take with our researchers as well.

So thank you both so much. This has been a really interesting conversation. And as we're coming to the close now, we'd like to end the podcast by discussing what's the point of all of this? 

And I'm probably a little bit biased, but I think it's clearly been quite inspiring today.

Brenda, you kind of touched on this just now, but if you can summarise in a sentence or two, what piece of advice would you give to researchers who want to co-produce with members of the public?

Brenda: Where possible, partner with an organisation who has that expertise, and can help facilitate that relationship.

Be as open and transparent as you possibly can throughout the process.

Manage expectations.

If it's something that people want to be involved in and want to be part of, they're already in the room you already have them there, bad communication or not keeping people informed, you know, is where you will lose people.

Some learning that we have had is kind of give more time at the beginning of this process for relationship building. Initially, we were meeting quarterly, I think there would be something to be said to have those meetings a bit closer together to really forge that relationship early on.

Mark: And one last question for Liz. It's the same question, really, what do researchers need to consider if they want to co-produce their research in a meaningful way?

Liz: I think actually, the first question that researchers need to ask themselves is why they're doing it. 

And I say that because a lot of funders are asking for public engagement, and there's lots of great ways to do public engagement. 

What we're talking about is a little bit different. But I think that researchers need to ask themselves exactly why they want to do it and make sure that their answer is because they want to learn a different way of understanding the issue that they're researching.

That their motivation is to be inclusive, to share power and ultimately to democratise access to something, data, that tends to be very far removed from people's lives. 

That for me is the most important thing. It's for me the most rewarding thing that I've ever gotten to be a part of, and I'm not even a researcher, but I just think it's great, and everybody should do it.

Shayda: Thanks both. And on that note that's everything from today's episode.

Thank you to our guests, Brenda and Liz, and thank you for listening.

Mark: So Shayda, do you want to tell our listeners what's in store for next episode? 

Shayda: The next episode is about data ethics, so we'll be expanding a bit on what we spoke today around the ethics of involving people in research, but also how to use data ethically in a legal sense as well, so the many faces of ethics.

Mark: Until next time, stay curious about how your administrative data might shape society.

In a data-driven world, administrative data holds the power to tackle society’s toughest challenges - from improving healthcare and education to boosting the economy. But how do we ensure this data is used securely, ethically, and for the public good?

Featuring Nikhil Harsiani, Data Ethics Policy Advisor at the UK Statistics Authority, and Mhairi Aitken, Senior Ethics Fellow in the Public Policy Programme at The Alan Turing Institute, this final episode dives into how legal safeguards and public engagement combine to protect privacy while demonstrating trustworthiness. Discover trusted research environments, the Five Safes framework, and how involving communities makes research more transparent and impactful.

This conversation unpacks how strong protections and meaningful public dialogue are building a system where data serves as a force for public good, delivering solutions that are as fair and trustworthy as they are effective.


Wondering what administrative data is? Visit https://www.adruk.org/our-mission/administrative-data/.

If we used any terms you're not familiar with, check out ADR UK's glossary at https://www.adruk.org/learning-hub/glossary/.

For information on legal frameworks: https://www.legislation.gov.uk/ukpga/2017/30/part/5/chapter/5, https://www.adruk.org/fileadmin/uploads/adruk/Documents/The_legal_framework_for_accessing_data_April_2023.pdf, https://www.adruk.org/learning-hub/skills-and-resources-to-use-administrative-data/accessing-data-for-research/.

Learn more about ethical data use and the public good: https://www.adruk.org/our-mission/ethics-responsibility/, https://uksa.statisticsauthority.gov.uk/publication/guidelines-on-using-the-ethics-self-assessment-process/, https://uksa.statisticsauthority.gov.uk/publication/considering-public-good-in-research-and-statistics-ethics-guidance/pages/1/.

Discover approaches to public engagement: https://www.adruk.org/our-mission/working-with-the-public/, https://www.adruk.org/fileadmin/uploads/adruk/Documents/PE_reports_and_documents/ADR_UK_OSR_Public_Dialogue_final_report_October_2022.pdf, https://uksa.statisticsauthority.gov.uk/publication/considering-public-views-and-engagement-regarding-the-use-of-data-for-research-and-statistics/pages/1/.

Shayda: Hello, and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.
 
Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

So Shayda, you're our resident ethics expert. Are you excited about today?

Shayda: I'm seriously nerding out about today's episode. For those who don't know, I studied philosophy and medical ethics at uni, so it might be harder than usual to shut me up today. Our episode is all about ethics, which means how we understand what is right and wrong and how people should behave. Ethics is about having principles and values that help us decide what is good, fair, and just in our actions and decisions.

Mark: So do you have a favorite ethics story? I guess bonus points if you can make it about data too.

Shayda: Well, it isn't about data, but a few years ago, I was at an event hosted by GPs on ethics and GP experiences, and I remember one of the event hosts, who was a GP, started the event by saying, "I've been a GP for 30 years, and the first time I came across ethics was two years ago." He was referring to an ethics course he had taken, but I thought it was strange how he didn't consider his daily interactions with patients as doing ethics.

As someone who studied ethics, to me, it was a bit shocking. I guess it just made me think how the way we understand ethics can be different in different contexts. So some people might understand ethics as what not to do to get sued or not to go to jail. I don't know how the GP understood ethics himself, but I see it more as how we interact with one another and how we interact with the world around us.

What about you, Mark?

Mark: So I recently was invited to a series of focus groups around data ethics. So yes, listeners, I don't spend my time going to sexy cocktail parties all the time. I do have to go to these types of events as well. 

But anyway, the thing that really struck me from attending these focus groups wasn't the amount of time and technology that goes into data ethics, which is really considerable—from the laws in place to prevent abuse, to the technical infrastructure to keep data safe, to the forms and processes to make sure researchers use data for the public good. It wasn’t all of that, but really it was that these things are only good and useful if we can bring the public with us, and that without building that trust with the public, it’s all rather meaningless.

Shayda: Yeah, you're totally right, and your story actually is a perfect segue to introduce our episode today. 

In a world driven by good evidence, connecting administrative data sets together—for instance, connecting data on health with data on education—can serve as a really important tool for research. When used responsibly and ethically, it can drive meaningful progress across public policy, healthcare, education, and more, ultimately, hopefully, improving people's lives. 

But as we know, there are some people out there who don’t always want to use data for the public good, which can mean ethical standards are overlooked, or public trust can be compromised.

This means for people like us who want to use data for the public good, making sure that administrative data is held securely, safely, and used responsibly is completely necessary if we are going to be using data for research. As we know, administrative data is created when people interact with public services. Without people, there is no data. So it’s crucial that those of us working in this space demonstrate trustworthiness by adhering to legal frameworks and listening to and responding to the public. Today, we want to explore these issues in a bit more detail.

Mark: And to help us do that, we have two wonderful guests with us: Nikhil Harsiani, who is Data Ethics Policy Advisor at the UK Statistics Authority, which we might refer to as the acronym UKSA sometimes today, and we have Mhairi Aitken, who is Senior Ethics Fellow at the Alan Turing Institute. Welcome to the show, both of you.

Nikhil: Hi. Nice to be here.

Mhairi: Thanks so much. Good to be here.

Shayda: Please, can you tell us a little bit about who you are, where you're from, and what you do? Nikhil, let’s start with you.

Nikhil: I’m Nikhil. I am a Data Ethics Policy Advisor, as Mark said, at the United Kingdom Statistics Authority, or the UKSA. The UKSA is the governing authority for the Office for National Statistics, which a lot of viewers will know as the body that administers the census. It also encapsulates the Government Statistical Service (the GSS), which is an incredibly wide-reaching group of statisticians at work across government, and also the regulator, the Office of Statistical Regulation.

Shayda: Before I joined ADR UK, I had never heard of the UK Statistics Authority or the GSS or any of these other big acronyms. How did you end up at the UK Statistics Authority? Did you ever expect to be working somewhere like here?

Nikhil: It's a really great question. I, like you, was not very familiar with the UK Statistics Authority, with the UKSA. Actually, my first job out of university, I applied to the UK Statistics Authority as an executive assistant to the country’s national statistician, Professor Sir Ian Diamond. That was just under five years ago, and since then, I’ve been working in different roles within the authority.

Shayda: Sounds like a very important, high-pressure job straight out of uni. I think my first job out of uni was working in a clothing store. So, very impressed by that. 

Mhairi, what about you? How did you end up working in data ethics?

Mhairi: I work at The Alan Turing Institute, which is the UK’s National Institute for AI and Data Science. I’m a Senior Ethics Fellow, so my work looks very broadly at ethical and social considerations around advances in AI technologies and advances in data science. But my background is absolutely not in data science or AI. I studied sociology as my first degree, and my PhD, which is going back quite a number of years, was around renewable energy developments, particularly onshore wind farms.

But all my work has been focused on, I guess, controversies around new technologies and the importance of involving members of the public in decision-making around new technologies. My PhD looked at public involvement in policymaking and planning processes relating to renewable energy developments. That’s really my passion—the role of the public in informing ethical decision-making around innovation and technology.

I worked for about 10 years at the University of Edinburgh, particularly focusing on data-intensive health research, and again, the role of the public in informing decision-making or governance practices around data for health research. From there, my work gradually turned to focus more on AI, artificial intelligence. I worked for a couple of years at Newcastle University on a project looking at the role of AI in banking and financial services, and then from there, I started working at The Alan Turing Institute, where I’m focusing more broadly on the many different ways that AI is used across different sectors and industries and looking at ethical practices around data and AI.

Mark: Excellent. We want to get to know you both just a little bit better. So, first question: Is it "day-ta" or "dah-ta"?

Mhairi: Always "day-ta".

Nikhil: Always "day-ta". But I like "pah-sta" instead of "pa-sta".

Shayda: Pie chart or fruit pie?

Mhairi: Pie chart. I do like a pie chart.

Mark: Oh... this is the first time it’s happened.

Nikhil: Fruit pie. You can see I’ve got lots—I’m in the kitchen, though. I need to be around food. I do love a good pie chart in all its many forms, 3D, sector bits coming out of it. It’s great.

Mark: I can’t believe you’ve just brought up 3D pie charts as being good. 

One more question: What is your favorite statistic?

Mhairi: This is a tricky one, but one of my passions is horses. So, this is going to be horse-related. It’s an example of where I think horses have been unfairly treated. We measure the power of cars in horsepower, and so you think that one horsepower is really the power of a horse. But the power of a horse at top speed is actually 24 horsepower. So I feel like horses have been misrepresented. One horsepower is probably like a slowly meandering pony. So, I feel like that’s an injustice that needs to be corrected.

Mark: Oh, good. I’d always assumed that one horsepower was one horse. This is enlightening.

Nikhil: That’s a great one. I didn’t know that either about horsepower. 

One of my favourite statistics is one that I learned recently. I was recently introduced to blackjack, and I was shuffling a deck. A lot of blackjack is about learning certain patterns in the deck, people trying to work out cards and what’s coming next. I came across the statistic that, given the different permutations when you shuffle a 52-card deck, the number of permutations is 52 factorial, which is something like 1 times 10 to the power of 68—so billion, billion, billion, billion, billion. That means every time you shuffle a deck, the likelihood is that deck has never been shuffled in the history of time in that order.

Mark: Excellent. I suppose we better get into the more serious questions before the producers start sending me messages about going off-topic. 

Anyway, Nikhil, I’d like to start with you. My dad always goes on about the fact that he studied at the University of Life. He’s always concerned with how his data is used. What would you say to reassure someone like my dad that his data is used safely, securely, and for the public good?

Nikhil: Your dad has a very valid concern there. The amount of information that we give as citizens of the United Kingdom, through our health records, through our tax records, through our housing records—there is a lot of information that the government has about us.

There's two things here. There are lots of means through which researchers and government bodies, academia, and business can use that data, mostly for research.

The second thing is that there are also many ways about how data is used securely and safely. And when I say securely and safely, I'm also talking about ethically. A big part of how administrative data is used securely, and the way that that's checked, is that researchers, people that would like to use administrative data and access it for research purposes, have to go through an accreditation process that is defined by the Digital Economy Act 2017. And I'll refer to that as the DEA.

So the DEA has within it a research code of practice. And the research code of practice is a set of ways that three things have to get accredited. So if you think about you're using data, you've got a researcher who's using data, and they want to access, let's say, education records because they want to do research about, let's say, inequalities in schools across Wales. So they're accessing education records.

There are three things that the Digital Economy Act requires through an accreditation process. One is that people are accredited. The researchers themselves have to go through an accreditation process where they get assessed about their background, their training, the skills that they have to be able to handle that data with propriety.

The DEA also has an accreditation for the research project itself. It will be described and that will be assessed for its being in the public good, that it's in the interests of the public.

And accredited processes—so processes such as the way that the data is being held, the way that the data might be linked—these are processes that are done in secure environments.

All of these three things have to be accredited and assessed. Our data is important. It's a valuable asset, not just to the government, but obviously to us, and it has to be treated ethically and properly. So researchers, projects, and processes must go through this process.

Shayda: Nikhil, would you mind explaining what it means for something to be accredited?

Nikhil: It's kind of like a seal of approval, and that's done by the authorities that I work for—the UKSA. But what's really important is that under the DEA, if things change—if technologies are found in certain areas of modeling or themed analysis—the Research Accreditation Panel or the authority can say, "Okay, we need to re-review what it means to be approved." They can conduct that review. 

So it's not just, "We give you the seal for five years; off you go with a bunch of education data or schooling data." It can be reviewed at any point, especially if technologies change, circumstances change, policies change, or if certain topics become really important or politically charged, they may want to put more focus on a specific process or a specific set of data being used by researchers. It's an ongoing approval. I work closely with colleagues on the accreditation panel, and they are passionate about ensuring that trusted researchers, research environments, and research projects go through due diligence and are comprehensively reviewed over time—not just at a single point.

Shayda: That's really helpful to understand the intricate, complicated process around giving people, projects, and data the seal of approval. 

Mhairi, you have a history of exploring how to involve the public in research that impacts society. What does data ethics mean to you? And what does ethical use of data look like to you? 

We've heard what the legal definition is and how to use data responsibly in a legal way, but is that different from using it ethically? Or is using it ethically broader—does it include the legal aspect but go beyond it?

Mhairi: Clearly, these are overlapping areas, but to me, I would say that the law or regulation sets out what you must and must not do in terms of data practices—data collection, processing, storage, or usage. Those are the minimum requirements. You absolutely must comply with the laws and regulations.

But while the law dictates what you must and must not do, ethics is much more about what you should and should not do, and that's far less clear-cut. It can be very ambiguous. We will all have different ideas about what is the right thing to do in different contexts or for different purposes. Ethics is about grappling with those tricky questions of what you should and should not do, and in many instances, that might mean going well beyond legal compliance.

It might mean having different kinds of standards or expectations that go beyond what is set out legally or regulatorily. To me, what's really important in addressing these ethical questions—what we should and should not do—is to engage with a diverse set of viewpoints and perspectives. Different people will have very different ideas depending on the context, the purpose of the data, or the type of research.

We need the widest set of viewpoints and perspectives to begin answering those questions and think about what is the right thing to do in a given context. Often, ethics is conceptualised as being about avoiding risk or addressing negative impacts, and of course, a large part of it is. But it's also really about finding ways to maximise the value and benefits of innovation or research.

To me, that's what's really exciting. And we can only do that by having wide-ranging conversations with members of the public across society to identify those opportunities to maximise the value and benefits of data.

Mark: I really like that you touched on the positive side of it because I think we often focus a lot on the more negative side, which is rightful because we need to handle data very carefully and securely. Something that ADR UK has built its remit on is about research using data to support the public good.

We talked a bit about this in episode one—the public good. Can you tell us a bit about how UKSA thinks about public good? How is it defined and assessed, and what might it look like in practice? If you could give us a few examples, that would be helpful too.

Nikhil: A key point here is something Mhairi mentioned—ethical research and ethical use of administrative data serve the public good and are in the public interest. But these things change over time, and the way we define what is in the public good is by understanding what is important to the public and what the public wants.

As an example of research that serves the public good and is topical, there's ongoing research right now into how the questions in ONS-based surveys ask people about their ethnicity. This work is known as the Ethnicity Harmonised Standard.

The UK is an ever-changing country with diverse cultures and ethnicities, and the proportions of those change over time. One of the things the ONS does is establish these demographic qualities. With ethnicity, not only do the proportions change, but the way people want to identify their ethnicity also changes over time.

Some of the current research focuses on categorisation in the next census or upcoming surveys to include people who may have felt excluded before—people who may have had to tick an "Other" box and write in their response. This research meets the criteria for public good.

It provides an evidence base for decisions that will significantly benefit society and improve the quality of life for people. People want to feel included in the UK, and they should be included. Better data leads to better inclusion.

Shayda: I like what you said about how the definition of public good is ever-changing and follows what society feels is public good at the time. It reminds me of a public dialogue a colleague and I from the Office for Statistics Regulation did two years ago.

We spoke to members of the public across the UK about what they think public good is within the context of data and statistics. They also couldn't agree on one core definition. Interestingly, they understood public good, public interest, and public benefit to mean three different things, but that's a conversation for another time.

Something you mentioned earlier, which also came up in the public dialogue, was the need for safeguards around how data is stored, used, and accessed. It’s important to note that what we’re discussing here relates to data use for research specifically.

Can you tell us a bit about the safeguards around how data is protected?

Nikhil: That’s a really great question. All data is de-identified. What that means, in a nutshell, is, for instance, let’s think of our tax records. They have our names against them, of course, because we need to pay taxes, get tax refunds, etc. But those records, held by HMRC or DWP, are scrambled when they enter a secure environment known as a TRE—a trusted research environment.

Before that data even enters the environment, it is scrambled and assigned numerical codes instead of names. That is the most basic level of de-identification.

Once the data is de-identified, it is entered into a secure environment. Researchers can only access it through an accreditation or approval process. Additionally, the data itself is not allowed to leave the secure environment.

These controls are in place to help us feel confident that administrative data is being used responsibly by researchers.

Mark: That’s really detailed. Mhairi, if I could bring you in here. We have all these rigorous rules and frameworks to keep everything safe. I imagine it’s quite a lot for the public to keep track of, be aware of, or even know about.

We haven’t heard much from the public’s perspective on all this. Could you tell us a bit about what you think some of the risks are around not involving the public in this kind of research?

Mhairi: In my work, I'm really interested in idea of a social license for data practices. A social license is about, again, recognising that there’s a difference between what’s legally permissible and what’s socially acceptable—and to have a social license. So, you need to show that the ways that data is collected and the ways it’s used match up with public expectations or society’s expectations around how that data will be handled and used.

If we don’t have a social license, there may well be opposition. There may well be concern. There may well be that the ways data is going to be used will not be sustainable or supported in the long term. So, it’s very much in the interest of everybody working in this area to get this right and ensure that there is a social license—so there is public support for the ways that data is collected and used.

That means taking account of concerns that are raised, but also reflecting on priorities and interests of the public around how data should be used.

This is very much the case in other areas of innovation and technology I’ve worked in. Going back to the work I did around renewable energy and wind farms, it’s very clear that as they’re looking to develop a wind farm, for example, if they don’t meaningfully involve and engage local communities within those decision-making processes, they’re much more likely to face resistance. The development, I suppose, is not going to be acceptable to the community.

Whereas if you work with a community in those processes, there are opportunities to change what that project looks like—to change the way it’s developed—to do it in ways that better reflect community interests.

That’s a really strong parallel with approaches to data practices. There are opportunities to do things better if we take public interests and public concerns on board.

It’s really important that this isn’t just about communicating what’s happening—saying, "We have this data; we’re going to use it for this purpose. What do you think about that?" It’s important to be transparent around what’s happening, but it’s much more important to have those conversations earlier.

Maybe talking to community groups around: what matters to you? What are the areas we could do research in that would be really beneficial? What are the problems within society or that community groups are facing where maybe we could find a way to use data to address those challenges or to improve our understanding?

That kind of early stage is really important—and then continuing throughout the process: are these the right datasets to be using? Is this the right data to answer those questions? Is this the right approach to answering those questions? What should we do with those findings? How can we use them in ways that are meaningful and beneficial and are actually going to have public benefits?

Mark: I really like this idea of the social license and engaging in a responsible way—building meaningful ways of engaging with the public. Some of these risks around using data by the public, they’re very honest and true, but sometimes they end up getting mixed up with myths or conspiracy theories.

My dad likes to share a lot of these over WhatsApp. It’s the way he engages with what I do as a job—at least when he’s not sending me insults about Liverpool Football Club over WhatsApp.

Anyway, could you tell us a bit more about what are the key myths around data, particularly administrative data, and how we can start to address them?

Mhairi: Yeah. I mean, I guess where there are misconceptions or myths around how data is used or how it might be accessed, that’s a clear sign that we need better transparency.

We need better engagement to ensure there’s access to accurate information about what actually happens.

Maybe some of the biggest misconceptions or worries might be around whether data is being sold—whether data is being accessed by, say, private companies for commercial interests. Obviously, as Nikhil set out, that’s absolutely not what we’re talking about here when we’re talking about administrative data being used for research purposes.

But it’s important we have open conversations around what is actually happening.

In general, research that’s looked at public attitudes towards uses of administrative data in research has fairly consistently found there are very high levels of public support for data use in research purposes.

But that support is not unconditional.

It’s really important that we pay attention to the conditions that underpin that support and that will need to be met to sustain that support on an ongoing basis.

There are also concerns around: what is this data going to be used for? What decisions might be made as a result of this research? Does this mean it’s going to inform approaches to policymaking or service delivery that are treating people as generalised categories of service users, rather than taking into account individual circumstances and the nuances of individual needs? That’s a concern we hear quite a lot. What’s the aim of this? What’s going to happen as an outcome of this research?

Again, I think that’s where it needs to be really clear messaging—clear communication—about: what is the purpose of this? Is it informing better service delivery? Better policymaking? Audit of service delivery, perhaps? But how does that affect individual service users—individuals who might have different needs that can’t be generalised?

I think sometimes there’s a nervousness to discuss some of these things in public because there’s a worry there’s going to be opposition. But actually, opposition can often come because there’s a sense things have been covered up or there’s not openness—and then there’s worry.

That’s when we get the sensational tabloid headlines about dodgy deals and data sharing. Whereas actually, if we have more open conversations from the beginning—around, "these are the potential ways we could use this data. This is the potential good that could come from this research. If there are different organisations or actors involved, this is what that might look like" - and involving the public in those conversations is absolutely key - generally, if we’re doing that, we find people are quite understanding of the realities of what research looks like.

If we can have assurances that this is going to lead to public benefits, and there are clear steps in place to maximise the potential of those benefits being realised, then generally, the public is largely supportive. But it’s important we don’t take that support for granted—and we engage meaningfully with those concerns. It’s about bringing the public with us, not doing it without them.

Shayda: Reflecting on my own public engagement work, I’ve found similar findings. Once you have these discussions with members of the public, they want to know how the data can benefit them, and they are broadly supportive of data being used for public good.

How do we protect against bad outcomes—like hacking or people wanting access to data who maybe don’t have the best intentions? Nikhil, what is the role of UKSA in counteracting these issues?

Nikhil: Some of the things UKSA does include providing guidance for trusted research environments and policies through the DEA that define the levels of security they need.

There’s something called the "airlock" in trusted research environments. These are where people access de-identified administrative data—data from all of us—but there’s an airlock, meaning any other data coming in cannot be interfered with. That’s the first thing.

The other thing is that UKSA, through the Research Accreditation Panel, ensures that when university researchers, for example, access data in the research environment, it’s in a secure location. This could be at the university, in an office, or even at the ONS themselves. There’s a Secure Research Service, and the computers cannot access both the data and the internet at the same time, so there’s no way the data can be transferred. 

These are some of the minimum policies UKSA has set for research environments.

Shayda: Thanks, Nikhil.

We’re coming to the end of the podcast now. To wrap up, we like to ask our guests: what’s the point of all this?

Something that’s come out very clearly in these conversations is how we need to involve the public in discussions around how data is used or how it can be used for public good.

Can you summarise how we can better communicate the role of data research to the public in a way that is transparent and promotes trust?

Mhairi: At the crux of it, it’s about relationships, open communication, and recognising that to do the best we can with data, we need to do it in a relationship with the public. 

This is the public’s data, and we need the public to be part of that process to get it right and maximise the benefits to the public. It requires dialogue and conversation—not just telling the public what we’re doing, but bringing them into the process and conversation around this area.

Shayda: And you, Nikhil?

Nikhil: I just want to echo what Mhairi said. Ethics doesn’t exist in a vacuum. When things are done properly, this is all applied. This isn’t some obscure theoretical moral philosophy. Data ethics is about applying what is right and wrong for the time and views of the people to the way data is used.

As Mhairi said, the point of all this is for people to get involved—because it’s all of our data. We are citizens; we own our data. By getting involved, I encourage people to speak up to their hospitals, schools, universities, politicians, and councillors. Make your views known about how your information is being used. That’s the only way everyone can do it ethically and in the public interest.

Shayda: That’s everything for today’s episode. Thank you again, Nikhil and Mhairi—and thank you for listening.

Mark: Until next time, stay curious about how your everyday data might shape society.

On the first day of Christmas, your producers sent to thee… a bonus episode of Connecting Society 🎁

Mark and Shayda are coming together in person for the very first time to bring you this special festive episode. They answer some burning questions, including: what actually is their favourite statistic? Can we ever agree how to pronounce data? What are some surprising facts about the holiday season? And does Santa use administrative data for his naughty/nice list?
 
Grab a warm drink, settle in, and join us for an episode full of revelations, anecdotes, and behind-the-scenes secrets.

Shayda: Hello and welcome to Connecting Society, a podcast about how everyday data can shape our lives. I'm Shayda Kashef, Senior Public Engagement Manager for Administrative Data Research UK, or ADR UK to me and you.

Mark: And I'm Mark Green, Professor of Health Geography at the University of Liverpool. We are your co-hosts and guides around the wonders of administrative data.

Ho, ho, ho. Yes, today's episode is a bonus festive edition to celebrate the launch of series one and even sneak in a little bit about how administrative data fits into the wonders of the winter holiday season, whatever you are celebrating.

Shayda: And we're live rather than recording from home as usual. Today, we are recording in person in London, and it's the first time Mark and I are actually meeting in real life. So, first impressions?

Mark: All good, all good. Other than the weirdness of doing this in person and having the producers filming us and taking pictures, it's all very different, isn't it?

Shayda: I know, you can't actually see this, but we've got three cameras on us right now. Normally, at this point, we would introduce our guests and try to get to know them a little bit better, but we don't actually have any guests today.

Mark: Yes, that's right. We are going full Jason Derulo today—we are riding solo.

Shayda: I guess that means it's just you and me to celebrate the launch of the first season of Connecting Society.

(glass clinking)

Mark: Yes, we have a little glass—I will say it is non-alcoholic Prosecco, which is a good thing. As we all know, the quality of my jokes is already bad enough, let alone if we introduced alcohol into the equation. What we thought would be fun instead is to ask each other the same questions we ask our guests, partly so you don't think that we're AI-generated robots, and partly to show what floats our boats. 

Okay, I'll go first, Shayda: Is it "day-ta" or "dah-ta"?

Shayda: Definitely "day-ta."

Mark: Best answer you could have given. I think we'd have had to have a bit of a falling out otherwise.

Shayda: Yeah, I know we're probably offending some people here, including one of our producers, but it's definitely "day-ta" for me.
 
Fruit pie or pie chart?

Mark: Come on, it's fruit pie all day long. Pie charts are a terrible way of visualising data, and I don’t know why my students think they’re brilliant. They keep sending me these in their dissertations, and they’re really bad ways of showing differences or ratios. It’s hard to work out what’s going on. And then they start doing 3D versions, and they’re even worse. 

Well, I hope they’re not listening to the podcast; otherwise, I’m gonna get in trouble here. They know it. They know it. I tell them this.

Shayda: I feel like they want to get some bonus points for creativity. 

I’ve got a really important question to ask you—something that I’ve been waiting a long time to ask: What is your favourite statistic?

Mark: Oh, pressure. Now, I had to think long and hard about what my favourite statistic was, and I’ve been thinking about it for a long time because I thought it would come up on one of the podcasts. The one that I’d like to go with is from my first-year lecture on health geography. I think a good statistic tells a story.

So, the current Liverpool manager at the time of recording is Jürgen Klopp, and he has just bought a house in Hale Barns, which is near Altrincham, just outside of Manchester. Life expectancy at birth there is currently 82 years if you’re male, almost 88 years if you’re female. Now, if we compare that to where he works in Anfield, you’re talking about almost nine years fewer life expectancy for males and just over ten years less if you’re female. These are quite shocking, big differences over what is maybe a 40-minute commute. I sometimes wonder whether he thinks about that on his way into work or not.

Shayda: Yeah, it’s crazy how where we live can impact our lives so heavily, including how long we actually live for. That’s a pretty depressing statistic.

Mark: And it gets worse. If you look at something like healthy life expectancy—which is the average number of years a person can expect to live in good health—you’re talking 54 years if you’re male or female in Anfield, versus 71 or 73 years if you’re in Hale Barns. Essentially, people in Hale Barns live almost the same number of years in good health as people in Anfield live for their entire lives, which is just very shocking. And these aren’t even the most extreme geographical inequalities that we can see in the UK.

Shayda: Very shocking indeed. And actually, my favourite statistic also isn’t a super fun one. 

Did you know that a third of people in the UK don’t apply sunscreen to their faces over summer? I know it sounds trivial, but this could also be contributing to their life expectancy, because skin cancer is a real thing. I apply sunscreen on my face all year round. I’ve even got some on right now.

Mark: I like that. You’ve just confirmed that skin cancer is a real thing. That is the top knowledge you get on this podcast.

Shayda: Quality knowledge! 

All right, Mark, here’s another question for you: does admin data get a rest over the holiday season?

Mark: Of course not. I mean, that’s the cool thing about it. It’s always collecting data; it’s always there in the background. You know, it’s got no quibbles about working that shift on Christmas Day. Otherwise, you know, it’d be a bit rubbish if we had a tagline for the podcast being like “everyday data” and actually, it turns out it’s not every day. It’s only 250-odd days of the year, and the rest of the time it’s just having a day off.

Shayda: Well, hopefully, our researchers are having a break over Christmas.

Mark: You want to know some cool things admin data has revealed to us about the festive period?

Shayda: Always.

Mark: Shall we start cheerful? Let’s go with deaths.

Shayda: Wow, Mark, come on.

Mark: I mean, I did my PhD in mortality, and my PhD starts with the line—

Shayda: Hang on, hang on. We said no jargon on this podcast. What’s mortality?

Mark: Mortality is the official word for death.

Shayda: There we go. Sorry.

Mark: That’s all right. Thanks for calling me out. 

Yeah, my PhD started with the line, "Everybody dies." So that’s the sort of morbid nature of me. I get it from my dad. I can’t help myself sometimes. So, all deaths have to be registered officially. That’s an official administrative data source. According to the state, you are not dead until it’s been submitted on a form and appears on an Excel spreadsheet somewhere. What do you think happens during Christmas Day?

Shayda: Well, you said administrative data is collected all year round, so I’d like to think that the deaths keep on getting recorded. Although I do also want to think that people get a day off, so I don’t really know.

Mark: It’s a good guess. Yeah, so the deaths still happen, but they don’t get recorded on Christmas Day because there’s no one to record them. Everyone’s off celebrating. And actually, the number of deaths falls quite sharply, so you will see a third fewer deaths on that day. So we’re talking about 5,000 fewer deaths compared to, say, the previous week. But obviously, those deaths are still happening. They just can’t be recorded because it’s a Christmas break. So, one day, Christmas Day, you’ll see fewer deaths, and then the next day, you’ll see an inflated number of deaths—not straight away. You’ll see them appearing over the next week. Obviously, places are closed for Boxing Day.

It’s a bit of a red herring, though, because unfortunately, people are still dying. Winter tends to be a bit of a risky period. You’ve got influenza circulating around; it’s cold. Unfortunately, these are big drivers of deaths at the country level, so it’s more of a reporting effect than a true Christmas effect.

There’s some really interesting research that fits in here that originally came out of the States, but it’s been shown to be the case in other countries as well. We see that people dying of heart-related conditions actually spike over the period. There’s an increase on Christmas Day and an increase on New Year’s Day. This is linked to people maybe partying hard, or they’re just less likely to go to healthcare or seek treatment because they don’t want to spend their Christmas in a hospital.

Shayda: Also, I used to live in the US, and you don't really want to get in the middle of an American person trying to celebrate the festive season, whatever season.

Mark: That is a top tip.

Shayda: You used to live in the US too, right?

Mark: I spent a bit of time there during my PhD. I loved it. I spent some time in Massachusetts, that part of the world.

Shayda: Nice, never been there before.

Mark: Well, that covers the end of life. What about the start of life - births? So what do you think Shayda, do they go up or down on Christmas Day?

Shayda: Well, I usually, when I think about births, I count back nine months. I guess springtime is probably around the time of conception, and that's quite like fun, romantic time. So I would hazard a guess that, yes, they do go up.

Mark: Unfortunately, that's not really what we see.

Shayda: Oh, no!

Mark: So December, the 25th and the 26th have the lowest number of births.

Shayda: But that's probably because the doctors don't want to work.

Mark: That's part of it.

Shayda: Yes, actually, I have a cousin in Dublin, and she was supposed to be born on St Patrick's Day, but the doctor didn't want to work that day, so he delivered her a day early.

Mark: Excellent. I mean, that's all it is, right? It's people aren't there to work. They're not there to deliver. Of course, still, natural births will happen. They're not going to stop that process. But more of the kind of medical ones where they're intervening, inducing births, those get postponed slightly.

Shayda: Okay, that makes sense. But also, for the record, medical professionals do work on Christmas. My sister is a nurse, and she has had to work during the Christmas period before.

Mark: But we see 400 fewer births on average than compared to what we'd expect. That's down 20%, 25% depending on which year. So it's quite a big effect, and you see it on the first of January as well. The funny thing is, you also see a drop on the first of April.

Shayda: I'm willing to bet that's because parents don't want to give birth to their children on April Fool's Day.

Mark: It is absolutely that.

Shayda: Also, if you are born on April 1, it's totally fine. It's just a day.

Mark: One more for you. What do you think's the most popular day to be born on?

Shayda: Oh, I don't know.

Mark: It's the 26th of September.

Shayda: I was born on the eighth of September!

Mark: Oh, very good.

Shayda: Why do you think that is?

Mark: Well, you were kind of spot on earlier when you said...

Shayda: Yes, it's because New Year's Eve. You know, people like to get a little close to one another. It's cold...

Mark: Maybe not just New Year's, but yeah, it's the start of the year. New year, people make big life decisions. So you have most amounts of births in September and October.

Shayda: Wow. Okay, that makes sense. Speaking of Christmas, do you think Santa would use administrative data to plan giving presents to everyone?

Mark: I'd hope so. I mean, what sort of operation is he running if he isn't? Do you think he has access to linked data? I'd hope so.

Shayda: Yeah, well, obviously registers of the names of everyone in the UK and their addresses and their age, and probably, hopefully, their wish list.

Mark: Their wish list. I wonder how he gets hold of that, because when I was a child, I had to write a letter to Santa and I'd give it to my dad, and he said he'd pass it on. And I have no idea how he did. I think one year we actually put it in the post box, even though it had no stamp on it, my mum used to put them up at the chimney, and the idea was that you would go up the chimney and somehow reach Santa. So I'm hoping he's got some sort of computer-based database. There must be a better system for that. 

Do you think Santa has a naughty or nice algorithm?

Shayda: Well, I used to be a bit of a naughty kid, so if he does have one, I hope he's done some public engagement with children on how to develop the algorithm absolutely, and as we've seen in the podcast series, that's really important for getting impactful research.

Mark: And thinking about ADR UK, what if we wanted to make that data available for research? So, for example, say the Bureau of Fantastical Creatures, they want to get hold of this as part of their analysis for whatever program of work they do. You know, we need to get our friends in the data centres, I guess, to make sure it's all non-identifiable. What do you think?

Shayda: Yeah, they need to remove things like names and addresses to make sure that it can’t be linked back to individuals. 

And then we can link that data to anonymous Easter Bunny data or Tooth Fairy data to see whether the amount of sweets eaten relates to the amount of tooth decay! 

Mark: Oh, I can see a really good study here linking that to people who are being hospitalised for dental treatment or dental records. It writes itself. This is an idea.

Shayda: There you go. And I can't believe we're finally recording in person. To our listeners, believe it or not, a lot of work goes into recording these things. 

Mark, why don't you tell our listeners about some of the hijinks that we got up to?

Mark: Oh, now our listeners will probably think that we record these episodes in state-of-the-art recording studios, but we don't actually. It's a bit of a shocking revelation, isn’t it? On the first episode, Shayda, you had an interesting high-tech way of creating a sound booth to record, right?

Shayda: Well, that's a really kind way to put it. So I listened to a lot of podcasts. And I was listening to a lot of podcasts over lockdown, and they were all recording under blankets. They were like, get into a wardrobe and climb under the blanket. It's really good for sound and all that stuff. So yeah, I got a little carried away with our first episode, and I recorded under a blanket for it, and I was kind of expecting all of you guys to be under blankets. Yeah, I was the only one, but never mind. It was fun, but it was too hot.

Mark: I think the other thing we can reveal is that we both had to interview for this role. Yeah. I mean, believe it or not, there was a rigorous shortlisting process that brought you your co-hosts today.

Shayda: How did you find it?

Mark: I applied because I thought this would be a great way to fulfill my ambassador role. So I am an ADR UK ambassador, which means I’m supposed to be promoting admin data to the world. So I thought it’d be a great way of doing that. 

I didn’t think I’d get it. And then I got an email saying that they’d like to have a chat with me about the role. Could I do it, and it would be the first day I come back off holiday. And I thought, "oh, it’s just a friendly chat. That’s fine. I can do that."

And then I remember going on holiday, having a week off, coming back, and the first day I came into work, I saw this email saying it was going to be an interview. It was a mock podcast that we’d have to do. They said I didn’t need to prepare anything, but it’d be fine. And I just panicked because I got in, I had a bazillion emails to answer, but the most important thing was preparing for this mock interview.

Well, I wanted to prepare some bad jokes and have like, a persona, and I feel like if I’d had a week at it, I could have really, really done my best. And so I was like, "I don’t know what to do. I don’t know what to do."

So I sort of sat round and thought about it, and then I showed up, and there were the three producers. There was Chris, Ellie, and Laura. They role-played some characters. All I can remember, really, is producer Laura put on this absolutely brilliant, grumpy impression of a public member who was kind of skeptical about admin data. It was very much an Oscar-winning performance. I think it was tough. I wasn’t expecting all of that.

Shayda: Well, I’m glad you made it through, because I feel like we are a pretty good duo.

Mark: Yes.

Shayda: I had a lot of fun with it, but it was strange being interviewed by people I work with, so I definitely get that.

So we’re wrapping up now. We normally end with a segment on what’s the point of all of this. And for many of us, the winter holidays aren’t just an excuse to get the latest Xbox game or, in my case, skincare serum. It’s time to spend with family and friends, and we’re spending this podcast with the Connecting Society family.

Mark: Yes, and this podcast is more than just the two of us. We have three wonderful producers, and this podcast just wouldn’t be possible without them both in organiSing, getting the guests to arrive, promoting the podcast, editing it, taking out all my terrible jokes. And you know, just having to sit through listening to us on end, talking.

I mean, we will tell you that a helpline number will be shared with the producers at the end of this series, just in case they need it.

But with that in mind, we’ve got them a little surprise today. So I’ve got everyone a little thank you gift: little Lindt bears. I nearly gave it away when you asked me if I went in a Lindt shop.

Producers: Oh my gosh!

Mark: So there’s one for you each.

Producers: Aww, thank you!

Shayda: Thank you so much.

Well, that’s everything from today’s episode. Thank you for listening, and we wish you a joyful winter break.

Mark:
Until next time, stay curious about how your everyday data might shape society.