Public engagement in a rapidly changing system: insights from Understanding Patient Data’s State of the Nation Report

The work of Research Data Scotland (RDS), our partners and others across the data landscape can only happen with a social license with the public. This isn’t a piece of paper you can sign or a handshake you can feel, but an ongoing commitment that we will be trustworthy and transparent in our processes, actions and communications.

Building and demonstrating trustworthiness is a core pillar of RDS’s strategy. Our public involvement and engagement activities help us to understand and address public concerns, but any single organisation’s public engagement will always be limited.

In a new report, Understanding Patient Data has brought together more than one hundred UK sources of evidence – including work by RDS – to develop a holistic view of public opinions of health data use and highlight opportunities to increase public trust.

Genuine understanding is vital for meaningful support

The report, ‘Understanding Patient Data in 2026: navigating public confidence in a changing health data system’, identifies that overall, public support around the use of health data for research is high. There is consistent support for using patient data to improve care, support research and deliver wider public benefit, with support across survey studies often exceeding 85%.

However, for support to be meaningful, it must be based on genuine understanding. As the UK and international data landscapes become increasingly complex, it is vital that public understanding does not fall behind the pace of technical change.

Areas like AI, federation of data services and cross nation policy are developing rapidly, and present opportunities to utilise public sector data to generate large scale public benefit in ways that simply weren’t possible before. However, these are also highly technical areas that can be intimidating and difficult for the public to fully comprehend, with systems that change faster than public understanding can keep up.

Throughout the report, a consistent theme is the importance of clear communication that meets the public where they are. The impact and importance of good communications cannot be understated, but it is often undervalued and underfunded in major projects. To claim genuine support from the public, we must ensure that communication is clear, consistent and accessible throughout everything we do.

Conditions for public confidence

Understanding Patient Data identified four conditions that underpin public confidence:

• Clear public benefit

• Visible governance and accountability

• Trusted organisations and responsible stewardship

• Meaningful public influence over decisions

The strongest and most consistent of these requirements was the need to ensure and evidence public benefit for patients, the NHS or wider society. The report highlights that this has remained one of the most stable findings in public attitudes to research over the past decade.

This resonates with our own findings from our report on public opinions of data access for research, in which public participants repeatedly shared that public benefit was the key factor in deciding the appropriate use of data for research.

Our public engagement has identified prioritising public benefit as being particularly important when considering data access by the private sector. Research using public data should clearly outline how their proposed work will return public benefit when applying for access, with consideration of safeguards to vulnerable groups.

Understanding Patient Data’s findings are a welcome reminder that while streamlined approvals processes ensure we get the most value from Scotland’s public sector data, demonstrable public benefit must always remain at the core of all research projects if we are to maintain public confidence.

‘There is no single public’

The State of the Nation report gives an insight into the feelings of the public towards health data but emphasises that ‘There is no single public’. We cannot just rely on broad engagement to maintain a social licence.

It can be easy to focus on surveys and statistics, but it’s important to remember the real people behind the figures. People’s attitudes are shaped by their lived experiences, not demographics, and ongoing involvement and engagement with communities is key to maintaining trust and public confidence.

The public need to be able to influence decisions at a range of levels, and this is only possible by creating a culture of public involvement and engagement and giving Trusted Research Environments (TREs) the support to embed them. As we have found from our own work with embedding a Public Impact Advisory Group in the Research Data Access Pathway, this requires time and money investment as well as support from senior leaders in all relevant organisations. It cannot be the responsibility of one person or team – meaningful public involvement requires buy-in from everyone, at all levels and all stages of the data access process.

Maintaining public trust is an ongoing process – one which doesn’t, and shouldn’t, have an end point. Data for research systems are evolving and will continue to change, and it’s necessary that public engagement keeps up. Understanding Patient Data’s report is an invaluable contribution to ensuring that social license remains at the heart of everything we do.