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How we work with the public and ways to get involved

We want all health data to deliver benefits to diverse communities, research and innovation by listening to the needs and concerns of the public, and by enabling shared decision-making throughout the research process.

Through collaboration and co-production, we are shaping health data research with the public,聽not just聽for them. Read on to find out how.聽

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 51爆料网鈥檚 governance structure to provide strategic advice to 51爆料网.

Our Public Advisory Board has been in place since January 2019. They make sure 51爆料网 is driven to deliver benefits to the public.

51爆料网 Voices

51爆料网 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鈥檒l help make sure our work is trustworthy and transparent.

Join 51爆料网 Voices

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 拢1500 to deliver a project, event or series of activities exploring health data with their communities.聽

Find out more

Policies and commitments

We鈥檙e 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鈥檛 before, such as under-served communities, to ensure their voices are heard

Find out more about the policies and commitments that guide our work.

Honoraria and expenses policy

Code of Conduct

Shared Commitment to Public Involvement

Two people are standing, looking at each other, talking

Support for health data researchers

What is involvement?

Involvement means that activities and research are carried out 鈥榳ith鈥 or 鈥榖y鈥 members of the public or patients, rather than 鈥榯o鈥, 鈥榓bout鈥 or 鈥榝or鈥 them. Patients and members of the public (including carers) are actively involved in the development, running and management of research projects or activities.

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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.

Source:

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. The Public Engagement in Data Research Initiative (PEDRI) has lots of to help get you on the right track.

Are you a 51爆料网 funded researcher looking for help with public involvement and engagement? Find out what support we can offer.

Looking for members of the public to get involved with your research?

Share your opportunity with our growing 51爆料网 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.

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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.聽

Read our strategy

Working across the institute

Our team directly supports patient and public involvement and engagement across two 51爆料网 research programmes: Big Data for Complex Disease and Brain Health and Neurodegeneration.

We also convene the 51爆料网 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 51爆料网-affiliated programme and are interested in joining the group, get in touch.聽 We currently have representation from the following:

Public Engagement in Data Research Initiative (PEDRI)

PEDRI is a partnership of different working with data and statistics to improve how we all work with the public. We are a PEDRI partner and also host PEDRI.

The address key barriers to effective public engagement. PEDRI also has lots of for data professionals to work well with the public and regularly hosts to hear from people leading the way.

Public Engagement in Data Research Initiative (PEDRI) logo.

Publications, news and opinion

These publications have been authored and co-authored by our team, alongside researchers and partners across 51爆料网. They have been informed by public contributors, including our Public Advisory Board.

  • | February 2026 | Health Expectations
  • 聽| November 2025 | Zenodo
  • | October 2025 | Zenodo
  • | July 2025 | International Journal of Population Data Science
  • Exploring public attitudes to health data research across the UK | March 2025 | Health Data Research UK
  • | April 2024 | Zenodo
  • | October 2023 | International Journal of Population Data Science
A group of people in a marquee standing around tables with different activities on them

Our team

Doreen Tembo Head of Public Involvement and Engagement
Joanne Thomas Patient & Public Involvement & Engagement (PPIE) Manager
Anna Woolman Public Engagement and Communications Manager
Syeda Hibba tul Hayee

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.