What do members of the public think?

Levels of awareness and understanding

Public awareness and understanding of how patient data is used is generally very low. According to UPD research, a majority know ‘nothing at all’ (20%) or ‘a little’ (34%) about how patient data is used, echoed by similar findings from the Health Foundation. 57% of people do not recall ever receiving any information about the data held in their records.

Misconceptions about data are common, including who can access data, what data is in people’s patient records, and how the data is used. For instance, 61% of people in England incorrectly believe there is already a single national patient record in place.

People are more likely to be aware of data being used for their own individual care, and slightly more aware of data being used for research than planning and population health management.

The chart below shows a majority of people either are unaware or unsure of how the NHS uses data for secondary purposes.  

Overall views on the use of data

People are generally supportive of sharing their patient data, with levels of support varying dependent on who is accessing the data and for what purpose. According to UPD research, 83% of British adults say they agree with the statement “I am supportive of the use of patient data in the NHS”. A systematic review found 69-83% of the public are happy to share their data for research. Research from NHS England found that 94% of people agree that they are happy for the NHS to use their patient data to improve their own care, 89% are happy for the NHS to use their data to improve the care of others.

Research has found that caution about sharing data is primarily driven by a fear of data breaches and unscrupulous profit-seeking, and trust is driven by faith in data protection regulations, wanting data to benefit others, and belief in data improving services.

A minority of people oppose their health data being used by anyone for any reason. Studies put this figure somewhere between 14.9% and 21% of the population.

People are more likely to support the use of data for secondary purposes when de-identified data is used compared to identifiable. UPD research found 54% of people strongly or somewhat prefer de-identified data to be used, and data is de-identified vs identifiable. According to one study, support for the use of data increased an average 11 percentage points when data is de-identified, indicating that the nature of the data significantly affects public support.

Research by NHS England shows that the process of deliberation and engagement around issues relating to patient data itself leads to increased trust and confidence in how data is used for most people.

The chart below shows a plurality of people feel supportive of the NHS's use of data, with some variation between different nations of the UK.

Concerns and views on different uses

Support for different use cases

When presented with specific examples of specific uses of how patient data is used for planning and population health, each example received around 90% net support. Another study found majority support for each use case polled, with higher levels of support for use cases related to improving clinical care than use cases related to logistics and service planning. In research by NHS England, people were more likely to view a use case for data positively where they could see a tangible benefit, whether for themselves or others.

Our research suggests support for the use of patient data is higher when people are presented with specific examples of how data is used than when asked about support for the use of data in the abstract.

AI

Evidence on views about the use of AI in NHS is mixed. According to one survey, a minority are open to the use of AI in the NHS and a majority do not trust the NHS to use AI to analyse their patient data. According to another, a narrow majority (54%) of members of the public are supportive of the use of AI in the NHS for patient care, and 61% are supportive of the use of data for administrative purposes. Support is higher among men than women.  

When asked what they think the main disadvantage of AI in healthcare is, the most selected answers by members of the public were ‘that health care staff won’t question the AI system’s decision, even if it is wrong’ (30%) and that ‘AI decisions might not be accurate enough, meaning that the wrong decisions could be made’ (28%), ‘AI systems can’t show real empathy or kindness” (27%).

Concerns about data and views on risk

Loss or theft of data is the most common barrier to wanting to share health data. When asked what potential risk would have the most impact on wanting to share data for secondary uses, most people said either someone having unauthorised access to their data (31%) or an accidental or deliberate data breach (31%). A systematic review found perceived risks include unintentional data loss, unauthorised access and discrimination.

People generally believe the benefits of using data outweigh the risks. 78% of people asked whether the benefits of using data for planning and population health outweigh the risks answered ‘yes’, compared to 8% who said ‘no’. When asked whether commercial organisations should be able to access data for research if research would not go ahead without it, 61% agreed, and 25% said they would rather the research not go ahead than grant access. 

Trust in different organisations with data

The NHS is by far the most trusted organisation with data, garnering high levels of support. Research from NHS England shows 72% of people trust the NHS with their data, and a study from BCG found 90% support sharing their data with the NHS for any purpose. GPs in particular are trusted to manage health data, according to research by the Health Foundation.

Participants in NHS England’s engagement on the creation of a single patient record overwhelmingly wanted a system of tiered access to data wherein healthcare professionals can only see the relevant parts of a person’s record, with an audit trail of access.

According to the Health Foundation, people are most likely to report having high trust in GP practices (69%), local NHS hospitals and clinics (68%) and national NHS organisations (64%) and have the lowest levels of trust in health technology companies (39%), national government (34%) and local government (33%).

Whilst people are generally willing to share their data for research purposes, levels of support depend on who is conducting the research, with members of the public more willing to share their data for NHS research (94%), followed by academic research (85%) and pharmaceutical or medtech companies (68%).

According to UPD research, 83% of British adults trust the NHS to use their data responsibly, and 82% trust the NHS to keep their data secure. Another survey found that 68% of the public trust that the NHS is storing their data securely. NHS England research found that 83% of people trust the NHS to keep their data secure. 

Views on private sector organisations accessing data

Awareness of private sector access to health data is low, with only 16% of people having heard a great deal or fair amount about how commercial organisations use health data. According to UPD research with the Ada Lovelace Institute, 63% of people are unaware that the NHS grants access to health data to private sector organisations.

Private sector organisations are less trusted by members of the public with health data than the NHS and charities but are more trusted than local and national government organisations.

• When asked whether they had low or high trust in a range of actors with health data, private healthcare providers are the only private sector organisations with a higher proportion of respondents reporting high trust (49%) than low trust (47%).
• 54% of people have low trust in pharmaceutical companies (43% high trust), 55% report low trust in IT providers to the NHS (40% high trust), and 58% report low trust in health technology companies (38%).
• Another survey found that 41% support sharing health data with pharmaceutical companies, 29% oppose, and 29% neither support nor oppose. 33% support sharing data with life sciences companies, 30% oppose, and 32% neither support nor oppose.

Research by the Wellcome Trust and IPSOS Mori found that a majority of the public (54%) support health data being used by commercial organisations for research, whereas 26% oppose private sector access. 61% would rather see commercial organisations access data than the research not happening, whereas 25% would rather the research did not happen if it meant commercial organisations have to access data.  

Views on the private sector accessing data depend on views about private sector organisations in healthcare in general. Among people who think the pharmaceutical industry has a positive impact on the UK, 60% would be willing to share their data with pharmaceutical companies for research, compared to 38% of those who believe the industry has a negative impact.

Most people are comfortable with commercial organisations accessing health data if the following conditions are met: the activity has a clear public benefit, organisations can be trusted to have public interest at heart, de-identified data is used, and appropriate safeguards are in place.

In research by NHS England, people were broadly supportive of the NHS charging for access to health data to cover its costs, but believed it was important that realising value from data should not detract from the health service’s key purpose of improving health outcomes. A majority believed the NHS should seek to generate a surplus from providing access to data and that this should be reinvested in the NHS.

Most people are comfortable with private sector organisations generating profit from the use of health data if some of the profit is reinvested in the health system (35%) or the work also generates wider public benefits (25%). A smaller group of people are uncomfortable with any profits (29%) or are comfortable with profit being generated in any scenario (6%).

The chart below shows that whilst a narrow majority are aware of the NHS forming partnerships with third party organisations and a plurality are supportive, there are mixed views.

Views on decision-making, opt out and choice

In a study by UPD, when given a binary choice, 61% of people stated they would prefer a nationally-controlled single patient record over a GP record managed by GP surgeries. However, GPs are the most trusted to manage people’s patient data. This is echoed in NHS England's engagement on data which found that a clear majority were supportive of the creation of a single patient record. 

According to UPD research, 74% of people believe that members of the public should be involved in decisions about how NHS data is used. When asked which statement applies most to them regarding decision-making about their GP record data, 28% said they trust their GP surgery to make decisions on my behalf’, 28% said they wanted a direct say, 25% said they trusted their GP surgery and any other NHS organisation to make decisions, 18% said they trust the NHS in general.

When asked whether they preferred a national or regional decision-making model for decisions about the use of data for secondary purposes or the current model wherein GPs make decisions about their patients’ data, a majority of people who partook in NHS England's in-person deliberations preferred a regional or national model. However, those who answered a survey and therefore had had less time to engage with the topic were more resistant to move away from the model of GPs as gatekeepers of data.

81% of people said it was ‘very important’ or ‘somewhat important’ to be able to see their own patient records. Transparency is seen as important 69% said they agree or strongly agree with the statement ‘I would like to be able to see more information about how my GP data is stored, used and shared’.

Awareness and understanding of people’s rights to exercise choice about how their data is used is mixed. In UPD research, a majority either said they did not know or incorrectly answered whether they have a choice over the NHS using their data for different purposes. In one 2021 study, 53% of NHS staff, 29% and 17% of the general public were aware of the National Data Opt Out. In a 2022 report by NHS Digital, 62% of members of the public stated they were aware of their ability to opt out. However, the same study found that understanding of the different types of opt-out was low.

There is confusion among members of the public about whether they have opted out. In a May 2023 survey, 38% of respondents did not know whether they had opted out or not. A June 2025 survey by UPD found that 12% of the public in England said they had definitely opted out (see chart below). This is significantly higher than the actual opt-out rate across the country, suggesting misconceptions among the public.

For more information about opt-outs, including statistics, visit our opt-out page.

Demographic differences in views about data

UPD research shows that Black and South Asian respondents are slightly less likely (73.9% and 73.2% respectively) to be willing to share their data than White respondents (85.1%).

Trust and willingness to share data is generally higher among people of higher socioeconomic status. Research by UPD shows that people in social grade ABC1 were 8 percentage points more likely to say they supported all use cases of health data polled. 

Older people are more likely to trust the NHS with their data. According to one study, 79% of those over the age of 65 trusting the NHS with their data compared to 57% of 16-24 year olds. For younger people, there is a smaller gap between levels of trust in the NHS and commercial organisations, with a 17 percentage point difference between the most and least trusted organisation among young people, compared to a 49 percentage point difference among those over 65.

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