Introducing the Public Engagement in Data Research Initiative: Putting the public at the centre of data research

Categories: Public engagement, ADR UK Partnership

19 October 2022

The subject of data is a daily news headline. The pandemic has demonstrated the use of data is part of our national conversation and has an increasingly vital role to play in research. To unlock the full potential of data for research and statistics to improve people’s lives, the public needs to be actively and consistently heard, engaged and involved in decisions around how their data is used. However, current efforts to involve and engage the public are often fragmented across the sector.

To address this challenge, there needs to be a collective action to embed meaningful public involvement and engagement across the data ecosystem. As such, we are pleased to be joining this shared effort to drive forward these improvements as we announce our membership in the Public Engagement in Data Research Initiative (PEDRI).

This new sector-wide collaboration brings together a range of organisations who work with data and statistics to generate insights that can inform policy and practice. PEDRI’s goal is to collaborate on establishing and driving forward best practice for public involvement and engagement with data research and to bring the views of the public to policymakers and data holders in a more impactful way. This is to ensure data is being managed and used in ways that demonstrate trustworthiness and maintain the public’s confidence  in the safe, appropriate and meaningful use of their data in research.

Dr Emma Gordon, Director of ADR UK said: “Across the ADR UK programme, we know we need to go above and beyond our legal responsibilities if we are to maintain our social contract with the public to use administrative data for research. That is why we see it as our responsibility not just to embed meaningful public engagement into the research and data linkage programmes we fund, but to actively seek and promote best practice in how to do this. The PEDRI initiative is an important step forward in strengthening this work and providing a platform to support and share best practice in public engagement across the field of data research.”

Alongside the growing number of the initiative’s partner organisations, six have signed up to PEDRI’s mission statement:

 “PEDRI partners are committed to exemplifying best practice in public involvement and engagement in data-driven research and statistics. As organisations in a privileged position to be working with people’s data, we have a duty to listen to and understand what matters most to the public and act on their needs, interests, and concerns by involving them in decisions about data projects.

We are dedicated to embedding public voices at the forefront of our work to maximise the impact of data research, demonstrate trustworthiness and accountability, and build public confidence. As partner organisations we commit to working collaboratively and sharing learnings across the sector to enable meaningful public involvement and engagement across the data research and statistics ecosystem.”

Angela Coulter, Public Advisor said: “I definitely want my personal data to be used in studies that generate public benefit, but I need to know that it will be handled safely and used to good effect. Everyone should be able to find out how their data is used, for what purpose, and what the safeguards are, but this information is often hard to find. Solving this problem must become a top priority for those who look after and analyse our data.” 

Initial areas of focus for PEDRI:

  • Embedding best practice guidance and principles for public involvement and engagement that are specific and fit for purpose for those working in data research and statistics
  • Addressing resource and information gaps for researchers and public involvement and engagement practitioners when it comes to proactively working with the public
  • Proactively engaging the public so that we can listen to, understand and act on their concerns and build public confidence through local and national public campaigns. 

We are excited to be joining partners from across the UK data ecosystem as we come together for the very first time to demonstrate our commitment to bringing about real changes that will push forward best practice standards. Yet, we can only succeed in our mission if all research organisations, funders and regulators unite with us in our collective action to proactively work with and for the public.

Visit our website for more information and join today.

Reflections from across PEDRI's co-founding organisations

Professor Andrew Morris, Director of Health Data Research UK (co-founding organisation of PEDRI) said: “Public engagement and involvement is a cornerstone of data science. Simply put, it makes research better. It enhances the transparency and accountability of research, and the opportunity to deliver impact to address societal needs locally, nationally and globally. I am delighted that HDR UK is working in partnership to learn how we can maximise the benefits of public involvement and engagement at scale.”

Cassie Smith, Head of Legal, Trust & Ethics at Health Data Research UK (co-founding organisation of PEDRI) said: “To enable data-driven research that improves people’s lives, the public need to have trust and confidence in the safe, secure and trustworthy access to and use of their data.  Meaningful public engagement across the data ecosystem is vital to ensure research is developed and conducted in a way that that retains and builds trust.  The PEDRI initiative is an important step forward in building and scaling best practice for public involvement and engagement and ensuring research programmes are built on a foundation of deserved public trust.”

Professor Sir Ian Diamond, UK’s National Statistician, Office for National Statistics (co-founding organisation of PEDRI) said: “In these challenging times, it’s more important than ever to ensure that the public – our most important stakeholder - is happy for us to continue collecting data from across society and will benefit from the statistics we create. That is why it’s imperative we seek out the views of the public and involve them in decisions about their data. We are stronger together and this new partnership will improve how everyone in the data space engages with the public. This, in turn, will increase the quality of the data available to us to address a wide range of challenges, from the rising cost of living to regional deprivation and inequality.”

PEDRI Partners

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