The power of public involvement: Alan and Sonia’s journeys

One of the things I love most about my role at HDR UK is seeing the impact that public involvement has on shaping health data research. Over the years, I have had the privilege of working closely with members of our Public Advisory Board (PAB), who bring invaluable perspectives and experiences to our work. Today, I want to share the journeys of two of our members, Alan and Sonia, who have each found unique ways to contribute to the evolving landscape of public involvement in health data research.  

Alan on demystifying data access procedures

Alan’s journey with the PAB has been deeply rooted in the principles of trust and transparency. From the outset, he has been passionate about ensuring that the public understands how their health data is accessed and used. In 2021, the PAB ran a survey to gauge public expectations around data access processes. The findings were clear: people wanted transparency, consistency, and meaningful public involvement. Alan and his fellow PAB members turned these insights into concrete recommendations, advocating for clearer communications on data access procedures.  

But recommendations alone weren’t enough. The PAB took it a step further, working with the Pan UK Data Governance Steering Group for the development of Transparency Standards and run of a funding call, which led to their implementation in many different ways.  

Alan has been at the heart of this work, and his dedication has played a significant role in the progress we have made. Reflecting on his experience, he shared:

“I am really proud of my involvement in what has become, in my view, a significant step forward in transparency standards. I firmly believe that the Public Advisory Board has driven this forward, from our initial survey research in 2021 to assessing funding applications and participating in the recent Alliance Transparency Showcase. I truly believe this work will enhance public trust in how health data is used.”

Sonia on the importance of public engagement

Sonia, on the other hand, has had a very different but equally meaningful experience as a PAB member. Living in Northern Ireland, she has seen firsthand the importance of engaging with local communities to raise awareness about health data research. While Alan’s focus has been on policy and process, Sonia has been deeply involved in outreach and public engagement, hoping to make complex ideas accessible and relatable. 

One of the most exciting aspects of this work has been our participation in science festivals across the UK. In 2023, we made a concerted effort to move beyond online engagement and bring health data research to the public in a fun and interactive way. At the Northern Ireland Science Festival in 2024, Sonia helped lead activities that sparked curiosity and conversation: Lego competitions, data jigsaw workshops, and games designed to illustrate how health data can be used for research. 

For Sonia, these moments of connection have been incredibly rewarding. She told me:

“Being part of the PAB has allowed me to use my experiences and skills to inform HDR UK’s activities and work with other board members to encourage public confidence in health data research. The NI Science Festival was a fantastic opportunity to engage with families and local research organisations. I greatly enjoyed being involved and hope to take part in more events like this in the future.”

Looking ahead

These two experiences, though different, share a common thread: the importance of public involvement in shaping the future of health data research. Alan’s work has focused on ensuring that the frameworks around health data use are clear and transparent, while Sonia has been dedicated to engaging with the public through community-based events. Both have been instrumental in helping HDR UK to bridge the gap between researchers and the public, ensuring that the voices of those affected by health data research are heard. 

Their involvement has also highlighted some key learnings for us at HDR UK. First, involving the public in decision-making processes has greatly influenced our approach to health data research. Alan and Sonia, alongside other PAB members, have pushed for greater transparency, clearer communication, and a more inclusive approach to public involvement. It is also clear that building meaningful relationships with the public takes time, effort, and resources. But the rewards are invaluable.

Final thoughts

Both Alan and Sonia’s experiences show that public involvement is not just about gathering feedback but about empowering people to take an active role in shaping the future of research. Their contributions have had a tangible impact on our work and continue to inspire us as we move forward with our commitment to public involvement. 

Acknowledging the Contributions of our Public Advisory Board

As we look ahead, we are grateful for the dedication of Alan, Sonia, and all the PAB members. Their insights and hard work ensure that public involvement remains at the heart of everything we do at HDR UK.