Since joining Health Data Research UK (HDR UK) last May, I’ve helped shape our recently published Patient and Public Involvement and Engagement strategy. It builds on work such as our Public Advisory Board, HDR UK Voices, and science festival activities to promote public trust and transparency in health data science. 

The strategy was developed through public and professional consultations. Feedback from these consultations highlighted the need to engage people not already involved in health data science. Conversations with voluntary and community organisations showed that working through their sector is vital. This will not be a surprise to anyone who has worked in community engagement before. The Ideas Fund, British Science Week community grants, Simons Foundation, and People’s Health Trust are examples of organisations doing this at different scales in science and health. Research Data Scotland also allocated part of its public engagement fund to a community organisation for 2025. 

Our challenge as a health data research charity was to understand where we fit in and how we can work with communities to reach shared goals. This is what I’ve been gradually piecing together over the last year with the ultimate goal of developing an approach led by people who understand the needs of their communities the best.

Science festival attendees engaging in HDR UK's hook-a-data-duck game.

Which communities?

We started by commissioning a review of research into public attitudes to health data and health research to help us identify which audiences across the UK our community engagement should focus on. This review highlighted the following priority demographics: 

  • People from low socio-economic backgrounds
  • People from minority ethnic backgrounds 
  • Older children and young adults aged 11–25 (especially in areas of deprivation) 
  • People over 65 (especially in areas of deprivation) 
  • People living in rural areas (defined as settlements of fewer than 10,000 people in England and Wales, fewer than 5,000 in Northern Ireland, and fewer than 3,000 in Scotland) 
  • People experiencing digital exclusion 

This is not a complete list, but it gives us a starting point to help community organisations explore health data with their audiences. 

I’ve seen the benefits of micro-grants for community science engagement first-hand from my time at the British Science Association. The British Science Week and British Science Festival community grants support hundreds of under-served communities to celebrate science on their own terms. The beauty of this approach is that there are few restrictions on what ‘engaging with science’ actually means, allowing people without a traditional scientific background to create activities relevant to them. This led me to consider whether HDR UK could offer similar grants to empower communities to explore how data supports their own health and wellbeing.

Family engaging in a lego sorting game at a science festival.

Creating our ‘Take the Lead’ micro-grant programme

Over the last few months, I’ve been speaking with different community members and funders to understand how this could work. I am so thankful to everyone who gave their time to speak with me. These conversations were invaluable in helping us to refine our approach and create a narrative around the grants that hopefully allows people to begin to explore engaging with health data in a way that is relevant to them and doesn’t require any pre-existing or technical knowledge. 

The ‘Take the Lead’ micro-grants will enable communities across the UK to take the lead in exploring the role of data in their community’s health and wellbeing. In this programme, we are using a broad definition of ‘health data’ to be any data that can be used to understand more about all our health and wellbeing. This can be anything from someone keeping a health journal, through to tracking steps and on to data from NHS appointments (what we typically think of as health data at HDR UK). What one person may think of as health data and what it can be used for may be different from another. We want to celebrate and explore that collectively. 

Grants will be open for applications this September, with community groups able to apply for up to £1500 to deliver a standalone project, event or series of activities exploring how data can support their health and wellbeing between January – March 2026. Importantly, the application must be led by and embedded in community organisations primarily working with at least one of the under-served audiences listed above. 

We’ll be looking for community-led proposals that take a responsive, inclusive and creative approach. Examples could be a community step challenge, data-inspired arts and crafts activities, or a project to help gather trustworthy data to advocate for a community’s health and wellbeing needs. Community groups know their audiences best – we want to enable them to take the lead, providing support and guidance if needed.

HDR UK member of staff engaging with a family in a lego sorting game at a science festival.

Learning together

This is a new programme for us, and likely for many community organisations too. An important part of it will be learning together. We’ll look for ways to share the work and connect with others who want to show that data as more than numbers or spreadsheets. Data can build community, empower people, and support everyone’s health and wellbeing.

Find out more

Take the Lead grants open in September 2025. Eligibility and guidelines will be shared then. An online Q&A session about the grants will be on 11 September 2025 at 14.00 BST. Join our HDR UK Voices mailing list to receive updates on how to register and further opportunities. 

For questions contact involvement@hdruk.ac.uk  

Learn more about our community engagement work

Read our ‘Exploring public attitudes to health data research across the UK’ review