Kids’ Environment and Health Cohort: reflections on our public engagement journey to date

In this blog, Pia Hardelid, principal investigator for the Kids’ Environment and Health Cohort, shares her experiences of conducting meaningful engagement for the project. Pia is a Professor of Epidemiology (the study of health in populations of people) at UCL Great Ormond Street Institute of Child Health.

What is the Kids’ Environment and Health Cohort?

The Kids’ Environment and Health Cohort will be a national, linked administrative data resource. It will allow researchers to examine the relationship between the environment in and around children’s homes and schools, and their health and education outcomes.

The Kids’ Environment and Health Cohort will include de-identified data for all children born in England since 2006 – almost 11 million children. It will integrate:

• census data, and data from registry offices, hospitals, pharmacies and schools
• data on environmental exposures, such as outdoor air pollution, proximity to greenspace, and building energy efficiency.

This data will be de-identified and linked via NHS address records and school locations. To read more about the project, visit the Kids’ Environment and Health Cohort website.

How have we approached public engagement?

ADR UK defines public engagement in research as ‘a purposeful set of activities designed to promote an ongoing dialogue with the public about administrative data research, driven by active listening and responding.’ You can read more about ADR UK’s approach in their public engagement strategy.

For this project, our public engagement activities have included:

• school visits
• public engagement events
• communications via web and social media
• dialogue with a range of different groups of children, young people, and parents.

We have involved children, young people and parents in the Kids’ Environment and Health Cohort from the very beginning, to ensure that they have ownership of the Cohort. This is vital because the Cohort will contain their data. Throughout our public engagement activities, we have worked in collaboration with the Great Ormond Street Hospital Biomedical Research Centre Young Person’s Advisory Group, and Parents’ and Carers’ Advisory Group for research.

We have discussed the groups’ thoughts and feelings about linking data without the requirement for consent, and how we can make people aware of the Kids’ Environment and Health Cohort. The Young Person’s Advisory Group even helped us choose a name and design a logo. Two young people have also taken up work experience projects with us, to co-develop our communications and social media strategies.

As a direct result of our public engagement, we have:

• included clearer information on our website about how the data is stored, and how someone can opt out of their data being used for the Kids’ Environment and Health Cohort
• set up an Instagram page: @kids_envh_health_cohort, to ensure ongoing communication  with the public
• developed videos to explain the data held in the cohort and how it will be used.

What are we doing next?

Parents have told us that they are keen to read easy-to-digest summaries of research studies, but these are hard to find. They also want the summaries to empower them with information to improve their health and that of their children, rather than cause worry.

Researchers who want to use the Kids’ Environment and Health Cohort will need to produce a plain English summary of their research project and any findings for our website. We are therefore planning workshops with children, young people, parents and researchers to co-create advice for researchers on how to develop clear and empowering research summaries.

Some reflections on our public engagement journey to date

We have really benefitted from parents and children and young people sharing their time, views and ideas with us, which has helped shape our plans for the Cohort. We are very grateful to you all!

In general, we have found that parents and children and young people broadly support using linked, administrative data for research into how the local environment affects children’s health and education. This aligns with ADR UK’s literature review and public dialogue, which also showed public support for using administrative data for research for public good.

However, constructive and informative public engagement activities take time, and not just from parents and children and young people (in our case). We as researchers must also invest time and effort to ensure that involvement is meaningful for everyone. That time commitment should not be underestimated.

Many data providers, and ethics and governance committees, increasingly require researchers to demonstrate public engagement has taken place before an application to use administrative data for research is made. This helps evidence public interest in research use of the data, and can pick up on potential public concerns. However, even when researchers show strong public support, many research teams face substantial delays in accessing the data for research – so much so that some projects don’t go ahead.

This is not just disappointing for researchers and funders, but also for those individuals who have given up their time and shared (often personal) experiences with researchers, via public engagement activities for research projects they felt were important. Data owners should therefore carefully consider their requirements for public engagement at the application stage, particularly if they are not able to act on public recommendations in time.

How can I get involved?

If you want to hear more about the Kids’ Environment and Health Cohort or get involved in any of our activities, please get in touch via our website. We would love to hear from you.

I gratefully acknowledge Deirdre Leyden (Public Involvement/Engagement Lead for Research at Great Ormond Street Hospital Biomedical Research Centre), Shayda Kashef (Senior Public Engagement Manager at ADR UK), and Laura Mulvey (Communications and Engagement Manager at ADR UK) for their helpful comments and suggestions.