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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 51±¬ÁÏÍø’s governance structure to provide strategic advice to 51±¬ÁÏÍø.

Our Public Advisory Board has been in place since January 2019. They make sure 51±¬ÁÏÍø is driven to deliver benefits to patients and the public.

51±¬ÁÏÍø Voices

51±¬ÁÏÍø 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.

Join 51±¬ÁÏÍø 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 £1500 to deliver a project, event or series of activities exploring health data with their communities. 

Find out more

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.

Honoraria and expenses policy

Code of Conduct

Shared Commitment to Public Involvement

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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.

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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. Don’t worry, there’s lots of resources to help get you on the right track.

If you are a 51±¬ÁÏÍø funded researcher looking for support, or are interested in finding out more about our programmes, get in touch.

Get support

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

Share your opportunity with our growing 51±¬ÁÏÍø 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. 

Read our strategy

Working across the institute

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

We also convene the 51±¬ÁÏÍø 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±¬ÁÏÍø-affiliated programme and are interested in joining the group, get in touch.  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.

Their address key barriers to effective public engagement. It 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.
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±¬ÁÏÍø. They have been informed by public contributors, including our Public Advisory Board.

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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.