Involving and engaging patients and the public - UPDATE
At HDR UK, the public are not just involved in health data research - they are true partners. Whether you're a member of the public looking to get involved, or a health data scientist looking for support, find the opportunity that's right for you.
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- How we work with the public and ways to get involved
- Support for health data scientists
- Advancing public involvement and engagement practices
- Publications, news and opinion
- Meet the team and get in touch
How we work with the public and ways to get involved
Public Advisory Board
We can only achieve our vision and strategy if the public trust, and have confidence in, the safe access and use of health data for research and innovation. To support this, the Public Advisory Board sits within HDR UK’s governance structure to provide strategic advice to HDR UK.
Our Public Advisory Board has been in place since January 2019. They make sure HDR UK is driven to deliver benefits to patients and the public.
Opinion
Munisa: Be ready to have your say, never underestimate your value
After personal experience with a rare condition, I know how it feels to be bombarded with jargon and misleading articles. Getting involved allows me to have a say in all parts of the research process.
Opinion
The power of public involvement: Alan and Sonia’s journeys
To celebrate the Shared Commitment to Public Involvement’s third anniversary today, Ester highlights important contributions and insights from two HDR UK Public Advisory Board members, Alan and...
HDR UK Voices
HDR UK Voices is a network of people interested in influencing and shaping the world of health data research. Anyone can join, and by doing so, you’ll help make sure our work is trustworthy and transparent.
Take the Lead
We provide opportunities for community groups working with under-served audiences to build awareness and confidence with health data. In 2025, we launched our Take the Lead small grants enabling community groups across the UK to apply for up to £1500 to deliver a project, event or series of activities exploring health data with their communities.
News Announcement
Take the Lead: Funding 26 community-led health data projects
We are empowering communities across the UK to design and deliver creative, community-led projects that spark meaningful conversations about health and data.
News Announcement
Take the Lead: New micro-grants for community-led health data activities
We're launching new micro-grants to help communities explore how health data can support health and wellbeing, in ways that matter to them.
Opinion
How can data be used by communities for health and wellbeing?
Anna shares insight into HDR UK's community engagement work and new ‘Take the Lead’ micro-grants, which will support communities to explore health data in ways that matter to them.
Policies and commitments
We’re proud of how we involve and engage patients and the public in health data research. We do this by:
- Implementing feedback from our Public Advisory Board
- Inviting members of the public to workshops to ask for their opinions, so that we can develop and improve our work
- Releasing opinion surveys to gain diverse wider public feedback
- Developing events and programmes to reach members of the public that we haven’t before, such as under-served communities, to ensure their voices are heard
Find out more about the policies and commitments that guide our work.
Support for health data scientists
What is involvement?
Involvement means that activities and research are carried out ‘with’ or ‘by’ members of the public or patients, rather than ‘to’, ‘about’ or ‘for’ them. Patients and members of the public (including carers) are actively involved in the development, running and management of research projects or activities.
What is engagement?
Engagement describes the many ways in which the activity and benefits of an organisation or research can be shared with the public. Engagement is a two-way process, involving interaction and listening, with the goal of generating mutual benefit.
Involving and engaging the public at various stages of your research ensures it:
- is worthy of public trust and confidence
- is relevant and useful
- increases public understanding of health data
However, we understand that learning how and where to begin working with the public can be tricky. Don’t worry, there’s lots of resources to help get you on the right track.
If you are a HDR UK funded researcher looking for support, or are interested in finding out more about our programmes, get in touch.
Looking for members of the public to get involved with your research?
Share your opportunity with our growing HDR UK Voices network of over 350 people interested in health data research public involvement and engagement opportunities. Get in touch with our team at involvement@hdruk.ac.uk.
Advancing public involvement and engagement practices
Our strategy for working with the public
Working in partnership with patients and public, we are building on the progress we have made by delivering an innovative and ambitious Patient and Public Involvement and Engagement strategy.
Working across the institute
Our team directly supports patient and public involvement and engagement across two HDR UK research programmes: Big Data for Complex Disease and Brain Health and Neurodegeneration.
We also convene the HDR UK Public Involvement and Engagement Leads Community. We meet throughout the year to learn from one another and address shared challenges. If you lead public engagement for a HDR UK-affiliated programme and are interested in joining the group, get in touch. We currently have representation from the following:
- British Heart Foundation Data Science Centre
- Brain Health and Neurodegeneration
- DARE UK (Data and Analytics Research Environments UK)
- DATAMIND
- HDR UK Research Driver Programmes
- HDR UK North
- HDR UK Northern Ireland
- HDR UK Scotland
- HDR UK Wales
- Public Engagement in Data Research Initiative (PEDRI)
Public Engagement in Data Research Initiative (PEDRI)
PEDRI is a partnership of different UK organisations working with data and statistics to improve how we all work with the public. We are a PEDRI partner and also host PEDRI.
Their Good Practice Standards for public involvement and engagement in data research address key barriers to effective public engagement. It also has lots of resources for data professionals to work well with the public and regularly hosts online events to hear from people leading the way.
Publications, news and opinion
These publications have been authored and co-authored by our team, alongside researchers and partners across HDR UK. They have been informed by public contributors, including our Public Advisory Board.
- PEDRI Roundtable on Equity, Diversity and Inclusion in Data Research and Statistics: Summary Report | November 2025 | Zenodo
- Shaping Health Data Policy Together: Public Involvement in the Sudlow Review | October 2025 | Zenodo
- Improving transparency in data access processes: Developing best practice standards and promoting system-wide change through a competitive funding call | July 2025 | International Journal of Population Data Science
- Exploring public attitudes to health data research across the UK | March 2025 | Health Data Research UK
- PEDRI: Findings from our Public Consultation on the Best Practice Draft Standards for the Use of Data for Research and Statistics | April 2024 | Zenodo
- Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments | October 2023 | International Journal of Population Data Science
Get in touch
We’re always keen to hear from people interested in our work. Reach out at involvement@hdruk.ac.uk and someone from the team will get back to you.
