7 March 2025 | Coordinated by Jan Speechley, Public Partner at PEDRI and Co-Chair of the Public Advisory Group 

As PEDRI moves into the next part of its journey, the public remain central to our work to improve public engagement in data research.

The Public Advisory Group brings together people with diverse experiences dedicated to ensuring public voices are at the forefront of PEDRI.

My name is Jan and I am from Yorkshire. As a Public Partner for PEDRI, I have been involved since 2022 across all aspects of the initiative including working on the Good Practice Standards, Learning and Development and Communications.

Over the last two years, PEDRI has grown a lot. We’re now at the stage where we are able to formally create a PEDRI Public Advisory Group which I am very proud to help support and co-chair with PEDRI’s Operational Lead, Samaira Khan.

Me (Jan, left) and Nicola Hamilton (former Head of Understanding Patient Data, right) represented PEDRI at the Data Saves Lives 5th Anniversary Event in November 2024.

What does the Public Advisory Group do?

We bring the public perspective to PEDRI. Our collective experience and views will be heard and reflected in the work we do and the materials we create. For example, one of our first tasks will be to work on the PEDRI Resource Hub – helping to create a framework to ensure the highest standard of resources are included. We will help decide what makes a good resource.

Bringing the Group together

In early September 2024 our newly formed Public Advisory Group met for the first time. At this meeting Samaira and I shared the PEDRI story so far. Together, we talked about how equity, diversity and inclusion must always be integral to PEDRI and our aspirations for diverse voices to be included and heard in data research. We also all voiced our stories and motivations for joining PEDRI, which we share with you below.

Meet the team

Anwar

Hi, I’m Anwar from Kent.

I joined PEDRI to extend my work in promoting inclusivity and improving health outcomes by advocating for ethical and responsible data use. PEDRI also offers me the opportunity to interact with a wide range of people and further improve my own data knowledge.

My public involvement journey began as a lay reviewer at the National Institute for Health and Care Research’s Research Design Services. I later joined British Heart Foundation – Data Science Centre as a public member.

I’ve gained valuable insights into public involvement and engagement, particularly in data research. I learned the importance of ensuring all voices are heard, conducting research in true partnership with patients and including minority voices.

Coming from an ethnic minority background, I have firsthand experience with the challenges and misconceptions surrounding data sharing, particularly in health. I am also aware of how other minorities, such as people from low socio-economic backgrounds or disabled people, can feel excluded, contributing to further health inequalities. I am passionate about engaging and including all under-represented groups in all kinds of data research to ensure everyone benefits.

Anwar is also a Public Contributor for the British Heart Foundation Data Science Centre, a PEDRI partner. Click the image to read his recent blog on the importance of diversity in data research.

Heena

I’m Heena from London.

I have been involved in public involvement and engagement in research, including data research, for over two years. This has covered a range of projects including a data hub, data privacy research and methodology research.

My interest and concerns on the use of patient data is what prompted my very first application for a public contributor role. I am currently part of the Cancer Research UK (CRUK) Research & Strategy Insights Panel and CRUK Commercial Data Partnerships Panel. Through my involvement on these panels, I was offered the opportunity to represent CRUK on PEDRI’s Public Advisory Group.

My perspective on the use of data in research differs based on the type of data, the use of data, who is using it and other considerations. For example in healthcare research, there is a need to balance progress with the necessity to protect patient privacy and maintain public trust and confidence.

I am generally in favour of re-using research data (e.g. re-using consented data obtained from cancer trials) and feel that this can be a way to significantly reduce costs, speed up the research process and maximise value from that data. I have a much more cautious approach to the use of unconsented data, especially unconsented sensitive data. Often my cautious perspective on the use of unconsented data puts me in the minority group for some public involvement and engagement panels I have been part of.

I am also part of various other minority groups, and unfortunately this means that I have first-hand experience of health inequalities. So, I am acutely aware of how important diversity and inclusion is in every aspect of research, including data research.

Heena has been a public contributor in research for two years. She is now a member of the PEDRI Public Advisory Group.

Munisa

Hello! My name is Munisa. I am of South Asian heritage and was born and raised in London, where I still live today.

My interest in data research began during my undergraduate studies in Biomedical Sciences at Brunel University. For my final year dissertation, I was given the opportunity to study a disease of my choice. For this I chose to research cataracts, which was inspired by my own experience of being born with congenital cataracts and frustrated with the lack of information known about my condition. The project allowed me to immerse myself into new research, which I was fortunate to continue through a PhD.

At the start of my PhD, I joined Health Data Research UK’s Public Advisory Board. Drawing on my own patient experience, I contributed to discussions on topics like trusted research environments and data security. It was fascinating to explore and learn about these topics for the first time through dual perspectives, as both a researcher in my PhD and a member of the public.

Since then, I’ve been involved in various public advisory boards, contributing to initiatives ranging from designing funding calls to addressing technical challenges, such as international data transfers.

Now, as a member of PEDRI, I am thrilled to be alongside a passionate group with a shared goal of promoting sustainable and impactful collaboration between data researchers and the public.

Munisa (right) supporting PEDRI partner, Health Data Research UK’s, public engagement activities at Broadlands Fun Day last year.

Jackie

My name is Jackie and I live in rural mid-Wales.

My interests in data are to work towards ensuring transparency and data security for the public, ensuring that public data is accurate, and that the public are fully informed and engaged. I work on ethics committees to represent the public interest and to ensure that the public, and their data, are treated with respect.

I have two dogs and enjoy walking and swimming. This helps to keep me keep active which can at times be difficult as I have Lupus, an auto-immune disease. My condition gives me extra motivation to support health and care research whenever I can. My background is in public involvement and engagement which has included seeking the views and experiences of patients receiving NHS services in Wales.

Having previously worked with both healthcare and administrative data, I have enjoyed getting involved in public engagement in data research. I am a consumer panel member for Swansea University’s SAIL Databank. I am proud to represent PEDRI on its Public Advisory Group.

Prior to joining the PEDRI Public Advisory Group, Jackie has previously contributed to both health and administrative data research.

The Next Steps

The Public Advisory Group will be integrated into all aspects of PEDRI and our public voices will be heard across all workstreams, helping to shape its progress and its development.

We look forward to continuing to share our work and bringing the public voice to data research.

If you would like to find out more about anything mentioned in this blog, get in touch at contact@pedri.org.uk.