51±¬ÁÏÍø

Communities ‘Take the Lead’ on health data engagementÌý

Earlier this year, we introduced our new Take the Lead small grants programme, supporting under-served communities to deliver their own health data engagement activities. We had a huge response to the call, with just under 500 applications from groups across the UK.

ÌýThe standard of applications was incredibly high, which demonstrates the desire and need for opportunities like this within communities. Our funding panel, composed of public members, community leaders and public engagement specialists, were impressed by the range of ideas.

While we were only able to fund a small fraction of these applications, those selected by our panel use data to engage their audiences with a diverse range of health and wellbeing topics including mental health, dementia, physical fitness, alcohol consumption. Beyond the topics, our panel was also very impressed by the creativity of approaches to inspire conversations about health data like travelling murals, community gardens, dance and music.

Find out more about the funded projects

Alan Holcroft, a 51±¬ÁÏÍø Public Advisory Board Member, said:

“51±¬ÁÏÍø’s Public Advisory Board are strong advocates for diverse community engagement so ¾±³Ù’s been a real privilege for me to be involved in reviewing the first ever round of Take the Lead applications. Suffice to say that there were many creative projects put forward, and the calibre of entries was extremely high. I am looking forward to hearing about the impact that the successful applications have achieved in the months ahead.”

Expanding the programme through partnerships

Thanks to additional funding from Smart Data Research UK, Cancer Research UK, British Heart Foundation Data Science Centre and 51±¬ÁÏÍø’s Big Data for Complex Disease Programme, we were able to support a further 16 additional projects, bringing the total to 26 projects. °Â±ð’r±ð delighted to be partnering with these organisations and look forward to learning together alongside the Take the Lead cohort.

Cassie Smith, Director of Legal, Trust and Ethics at 51±¬ÁÏÍø, said:

“The response to Take the Lead has been overwhelming and humbling. Nearly 500 applications showed us that communities across the UK are ready and eager to lead conversations about health data in ways that resonate with their own experiences. We only wish we could fund them all, which is why we’re seeking partners to help us expand Take the Lead into future rounds and reach even more communities.”

±á±ð°ù±ð’s what our partners said about why they are supporting the programme:

is “delighted to be supporting 51±¬ÁÏÍø’s Take the Lead initiative. Our programme is dedicated to unlocking the power of smart data for public good – that’s data generated through everyday interactions with digital devices, including mobile apps, wearables and satnavs. We know from our recent public dialogue that people are excited by smart data research when they know more about it. They want it to help with real challenges, including social inequality, health and economic issues. And they want to be involved. Take the Lead is a brilliant opportunity to put these principles into practice, empowering communities to shape research that matters to them.”

are “proud to support community-led initiatives through Take the Lead, which will help demystify data and improve public dialogue on its uses and value. Health data is vital to do life-saving cancer research, but we cannot protect public trust in using data without improving understanding and awareness in communities across the UK.”

The is “committed to improving engagement with communities which have been under-represented across cardiovascular research. We are delighted to support 51±¬ÁÏÍø’s Take the Lead initiative which will empower local communities to engage with health data in ways that reflect their priorities and lived experiences. We look forward to seeing the positive impact these projects will create.”

The 51±¬ÁÏÍø Big Data for Complex Disease Driver Programme are “so pleased to be funding Take the Lead projects, which will enable communities to support their journey with health data and involvement with research. We support research using whole population health datasets to understand the development, diagnosis, and treatment of complex disease, including cancer and cardiovascular diseases. To do this in a way that engages and captures all people across the UK, we must support under-represented and under-served communities to get involved with health data activities.”

Doreen Tembo, Head of Public Involvement and Engagement at 51±¬ÁÏÍø, said:

“Through our public consultations, we heard clearly about the strategic directions we must take as an organisation, with trust, transparency, and inclusion at the heart of how health data research is done, particularly for communities who have historically been under-served. By working alongside trusted community organisations and connectors, we are creating space for people to lead, build confidence in how data is used, and shape research in ways that are meaningful to their lives. Looking ahead, we will focus on long-term partnerships and capacity building so that communities and researchers can continue to work together openly and equitably.”

Stay in touch

Are you a community group or member of the public interested in public engagement opportunities with 51±¬ÁÏÍø? Sign up to 51±¬ÁÏÍø Voices to receive updates.

Are you an organisation interested in collaborating with 51±¬ÁÏÍø to support community engagement with data research? Get in touch with involvement@hdruk.ac.uk and one of our team will get back to you.