August 11th 2026
A new report from Understanding Patient Data offers useful lessons for social care as health and care systems become more joined up.
Support is high, but not unconditional
Understanding Patient Data in 2026: navigating public confidence in a changing health data system brings together more than 100 UK evidence sources, including surveys, public dialogues, citizens’ juries and qualitative research. It also draws on Understanding Patient Data’s nationally representative public sentiment tracker, which tracks awareness, confidence and support over time.
It finds that public support for health data use often exceeds 85%, but confidence is conditional. People want to know how data is used, who can access it, what safeguards are in place and whether the benefits are clear and fair.
Related findings from the UK Patient Data Sentiment Tracker study in May 2026 with a nationally representative sample of 1,279 UK adults found that most people, 89%, were comfortable with their personal health data being used, but nearly half, 49%, said this depended on the situation.
People’s confidence depends on the purpose of data use, who information is shared with, how clear the safeguards are, and whether they feel they have meaningful choice. They tend to be more comfortable when data is used for care, research or service planning, and more hesitant when it is shared outside the NHS, particularly with commercial partners, technology companies or for AI and digital tool development.
The research underlines the need for reassurance as well as permission. Among people who are comfortable with their data being used, 44% are still concerned about it being accessed by the wrong people and 40% are concerned about data security and cyber-attacks. Confidence in data security has also fallen, with 52% saying they feel confident, down from 58% in July 2025.
Why this matters for social care
The report focuses on health data, but many of the findings will feel familiar to people working in adult social care. Social care data is increasingly part of wider plans for integrated, person-centred care. Digital care records, shared care records, data standards and joined-up services all depend on information being accurate, secure and available to the right people at the right time.
Better data sharing is not only a technical challenge; it also depends on trust. People drawing on care, unpaid carers, families and staff need to understand why information is being shared, how it supports care, and what rights and choices people have.
People need clearer information
Public understanding has not kept pace with the changing data landscape. The report finds that understanding of health data use remains low, even where support is high. For social care, this is particularly relevant: many people may not know what information care providers collect, how it is recorded, or when it may be shared with NHS services, local authorities or other partners. Clear, plain English explanations are needed if people are expected to trust more connected systems.
Trust is shaped by experience
The report also highlights that there is no single public view. Confidence is shaped by people’s own experiences of care: good care, accurate records and clear communication can build trust, while poor care, repeated errors or records that do not reflect someone’s needs can undermine it. For social care, data quality is therefore not just an operational issue; it affects relationships, confidence and people’s willingness to support data sharing.
Public narratives shape confidence
Public confidence is also shaped by the wider stories people hear about data. The report includes national media and social media analysis, and a companion media report reviewed 1,329 articles over 15 months, from March 2025 to the end of June 2026. These narratives influence how people think about risk, fairness, accountability and the organisations using their information.
A social care perspective
Michelle Corrigan, Chief Executive Officer at Digital Care Hub, said:
“These findings reflect what we hear from across social care. People understand that better sharing of information can support safer, more joined-up care, but they also want reassurance. They want to know that their information is accurate, protected and used for clear public benefit. As health and social care become more integrated, we need to put public confidence at the centre of data sharing. That means being open, using plain language and involving people drawing on care and unpaid carers in decisions about how data is used.”
The findings also point to the importance of meaningful choice. Opt-outs and information rights can be difficult to understand, especially where different organisations are involved. Social care leaders need to be clear about the difference between sharing information for direct care and using data for planning, research or improvement. People should not have to navigate complex language to understand what is happening with their information.
Digital Care Hub believes the social care sector has an important role to play in this conversation. Too often, national debates about data sharing focus on the NHS, even though social care data is central to people’s daily lives and to more joined-up care. Care providers, commissioners, system partners and technology suppliers all have a responsibility to make data sharing understandable, secure and accountable.
What providers can do
For providers, the research points to practical steps: keeping records accurate and up to date; explaining data sharing in language people can understand; making sure staff feel confident talking about privacy, security and digital records; involving people drawing on care and carers when designing new processes; and choosing digital systems that support good care rather than adding confusion or distance.
As integration increases, public confidence will be as important as interoperability. Social care can help build that confidence by showing how data sharing improves care, being honest about risks and safeguards, and making sure people remain at the heart of decisions about their information.
Background
Understanding Patient Data aims to make the way patient data is used more visible, understandable and trustworthy for patients, the public and health professionals. It produces accessible resources and guidance, commissions and undertakes research into public attitudes, supports good practice across the health data community, and brings the views of patients and the public to policymakers and data holders.
Understanding Patient Data works with patient groups, charities, NHS organisations and policymakers to support transparency, accountability and public involvement in how patient data is used. Its resources are available at understandingpatientdata.org.uk.
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