UPD’s first State of the Nation report, Understanding Patient Data in 2026: navigating public confidence in a changing health data system, provides a comprehensive picture of public awareness, support and confidence around the use of health data during a period of rapid system change.
The current landscape
Health data sits at the centre of NHS reform. The Government’s 10 Year Health Plan, the Data (Use and Access) Act 2025, the Life Sciences Sector Plan and the 2026 Health Bill (also known as the NHS Modernisation Bill), all place data at the heart of how health and care will be delivered.
Programmes such as the Single Patient Record, NHS Federated Data Platform and Health Data Research Service promise better connected care, research and innovation. But their success depends on more than technical delivery. Public confidence is now a critical part of the health data infrastructure.
UPD’s first State of the Nation identifies the factors that consistently determine public confidence and explores what they mean for the next phase of health data policy and implementation.
A comprehensive picture
The report brings together multiple evidence sources in one place:
- A review of more than 100 UK evidence sources, including surveys, public dialogues, citizens’ juries and qualitative research.
- UPD’s nationally representative public sentiment tracker, providing trend data on awareness, confidence and support.
- National media analysis, examining how health data is portrayed and which narratives have the widest reach.
- Social media analysis, exploring online discussion and how narratives evolve over time.
- Emerging findings from UPD’s forthcoming patient and public involvement and engagement (PPIE) research, mapping public participation and influence in health data decision-making.
Together these provide one of the most comprehensive pictures currently available of public confidence in health data in the UK.
Key insights
Public understanding has not kept pace with the changing health data landscape
Public understanding of health data use remains low, whilst public support for the use of health data remains high, often exceeding 85%. But confidence is conditional, varies across communities, and is shaped by experience and media narratives. The challenge is sustaining trust as health data systems become more connected, complex and contested.
There is no single ‘public’
Confidence in health data is shaped more by people’s experiences of healthcare than by demographics. Positive experiences build trust, while poor care and inaccurate records erode it. For underserved groups, concerns reflect wider inequalities, making fair governance and meaningful community involvement essential.
Opt-out is a behavioural expression of agency rather than outright rejection
The opt-out paradox challenges assumptions about why people make the choice to restrict access to their personal health data. More informed people often ask tougher questions, scrutinise governance more closely, and make active choices about how their health data is used – regardless of support in principle.
Four factors consistently emerge as the foundations of public confidence
Public confidence is built on four foundations: clear public benefit, trust in those using and managing data, visible governance and accountability, and meaningful public involvement. People want evidence that data delivers value, is used responsibly, is subject to robust oversight, and that public voices genuinely influence decisions.
What next?
The report concludes that public confidence should be treated as a system outcome, not an afterthought.
It calls for action in five key areas:
- Develop a shared vision and public narrative: explaining how major health data initiatives fit together.
- Make governance and choice visible: creating greater transparency about how decisions are made and how data is used.
- Put the public where decisions are made: embedding meaningful patient and public involvement beyond research.
- Deliver transparency with no surprises: building openness and accountability into programme design from the outset.
- Treat public confidence as a system outcome: monitoring confidence alongside technical delivery and coordinating leadership across the NHS, government, researchers, regulators and industry.
Supporting reports
Alongside Understanding Patient Data in 2026: navigating public confidence in a changing health data system, UPD has published two companion reports that provide deeper insight into key areas of the evidence base.
UK Patient Data Sentiment Tracker: Wave 3 Findings presents findings from UPD's nationally representative polling programme, tracking public awareness, confidence, trust and support for health data use over time. The report explores attitudes towards topics including data security, opt-outs, NHS partnerships, emerging technologies and major health data initiatives.
Health data in the headlines: a changing media landscape, produced with Portland, examines how health data is discussed across national media, trade media, social media and AI platforms. The report explores the narratives shaping public debate, the issues receiving greatest attention, and the role that media coverage plays in influencing public confidence and perceptions of risk.
Acknowledgements
With thanks to White Tail Consulting for helping bring together the evidence synthesis behind Understanding Patient Data in 2026: navigating public confidence in a changing health data system, to Dr Verity Tether, Senior Research and Analysis Manager at the NHS Alliance, for her expert data analysis, and to Portland for providing analysis of the media and social narratives shaping public discussions about health data. Finally, to all those who took the time to review drafts in advance and improve the final result.