If you’ve ever wondered why there seem to be so many organisations working on health data and public engagement, you’re not alone.
Across the UK, the landscape can appear busy, with different groups talking about trust, transparency, patient involvement and public engagement. From the outside, it isn’t always obvious how their roles differ, what they bring to the table – or why they all matter.
As part of National Patient Data Day, five organisations came together in an online panel discussion to explore the complementary roles they play in this space. While each brings a unique perspective, all share a common goal: to help ensure health data is used in ways that benefit communities and retain public confidence.
Different organisations with different strengths
No single organisation can ensure a trustworthy health data system on its own. Different challenges require different expertise.
use MY data is an organisation of patients, relatives and carers who bring their voices directly to conversations about how patient data is used. As an independent patient movement, it ensures those most affected by decisions have a voice in shaping them.
Understanding Patient Data plays a different role. They build evidence about public attitudes and expectations, helping policymakers and organisations understand what people expect from the use of health data, and supporting them to put those expectations into practice.
Health Data Research UK (HDR UK) embeds public partnerships throughout health data research, ensuring that public involvement is an integral part of how research is designed and delivered. Alongside this, the Public Engagement in Data Research Initiative (PEDRI) helps organisations collaborate and learn from one another, develops standards and supports consistent and good practice in public involvement and engagement in the data and statistics sector.
Meanwhile, Connected by Data brings expertise from beyond the health sector, championing participatory approaches to data and AI governance and helping communities play a meaningful role in decisions that affect them.
These aren’t competing roles – they’re complementary ones. Advocacy, evidence, research infrastructure, shared standards and participatory governance each address different parts of the same challenge.
Collaboration creates greater impact
The discussion illustrated the importance of collaboration. Whether that be patient-led campaigns gaining greater impact through support from organisations that can generate evidence, or influence policy. Or policy and research benefitting from the experiences and priorities of patients and the public, to ground them in real lived experience.
No single organisation has all the expertise, relationships or influence needed to improve how health data is used. By working together, organisations can focus on what they do best, while amplifying one another’s impact.
This is particularly important in a complex policy environment where there is a risk of organisations duplicating effort or asking the public the same questions repeatedly. Stronger coordination allows evidence, engagement and lived experience to reinforce one another rather than compete for attention.
Public partnership is everyone’s responsibility
The conversation also reinforced that meaningful public partnership goes well beyond consultation.
Good public involvement is continuous rather than one-off. It means involving people throughout the development of policies, research and services, and showing clearly how their contributions have influenced decisions. It also means recognising that different situations require different forms of participation – from keeping people informed, through to shaping decision making.
Transparency remains fundamental to meaningful partnerships. Being open about how health data is used, the benefits it enables, and the risks that need managing is essential for maintaining public confidence. But transparency alone isn’t enough. People also need genuine opportunities to shape decisions and to know that their perspectives will make a difference.
The discussion also challenged us to think differently about data itself. Rather than focusing only on who “owns” or “controls” data, we should also consider who is affected by its use and ensure those communities have meaningful opportunities to influence decisions.
Looking ahead
Collaboration isn’t always straightforward. Organisations face different priorities, limited resources and practical constraints that can make joint working difficult.
Despite those challenges, the discussion was optimistic about the direction of travel. There is growing recognition that building trustworthy uses of health data depends on stronger collaboration – not only between organisations, but with patients and the public themselves.
The health data landscape is diverse because the challenges are diverse. Advocacy, robust evidence, public partnership, research expertise and shared learning all play distinct roles.
The opportunity now is not to make our organisations more alike, but to work together more effectively. When those different strengths are connected, the whole system is better placed to deliver health data uses that are trusted, transparent and ultimately improve people’s lives.