Public attitudes to data in the NHS and social care​

We know that data saves lives and has the ability to transform health and care. 

We also know that if we want to use data across the NHS and social care better, we need the public to trust health and care organisations to use and access data. Health data holds huge significance to people, and can feel very personal. People feel very strongly about the use of data in health and care, which is why building a trustworthy system is essential. 

NHS England will soon be undertaking an ambitious programme of large-scale public engagement on data. This engagement will help determine our future data policy and answer important questions about how we use data for research and innovation. Ultimately, it helps put public trust at the forefront of the safe use and access to health and social care data.

Before we can speak to people, we need to understand how they think and feel about data in health and social care. To do that, we have conducted extensive research into public attitudes to data in health and care. We conducted a survey with over 2,200 people and held interviews and group discussions for more in-depth feedback. We were particularly interested in understanding the different attitudes people might have, and whether we can identify different segments within the public. This will help us to better understand how we can address different attitudes and needs in our large-scale engagement. 

On this page you can read the overall results from the survey.

We found that:  

• the NHS was the most trusted organisation, with 72% of respondents saying they trusted  
• 83% of people trust the NHS to keep their patient data secure 
• the most common concern that people have when it comes to their data security is cyber attacks 
• there is good knowledge, understanding and comfort in how the data is used in health and care 

We were most interested in how these attitudes differ within the population, so this research focused on uncovering six attitudinal segments. You can see a summary of these segments below.

You can read a summary and comparison of these six segments in the next chapter of this work, and we have a detailed summary of each segment towards the end of this report. This includes a summary of their demographic profiles, attitudinal and behavioural attributes, as well as what matters most from a policy perspective for each of these groups.  

We hope this research will be useful across the health and care sector, as well as for other colleagues who are interested in public perceptions of data. You can also stay up to date with our large-scale national engagement on data, including upcoming topics for discussion and findings.

This publication contains 9 chapters:

1. Public attitudes to data in the NHS and social care
2. Overview of segmentation
3. Confident Data Enthusiasts
4. Neutral Followers
5. Cautious Data Sharers
6. Unfamiliar and Unsure
7. Disengaged and Health Data Protective
8. NHS and Privacy Sceptics
9. Conclusion/methodology

Overall findings from this research are in line with other surveys that have been conducted on attitudes to data in health and care. For example, a 2023 Health Foundation survey demonstrated similar levels of trust in NHS organisations with patient data, as well reflecting broadly low awareness of how data is used. The Centre for Data Ethics and Innovation (now the Responsible Technology Adoption Unit) conduct an annual tracking survey of public attitudes to data and artificial intelligence, which also show similar levels of trust across various organisations with patient data. The CDEI findings also show similar concerns in the public about risks for data use in society.

What this study adds

We have analysed variations in knowledge and attitudes between members of the public to uncover six different segments. This research therefore strengthens our understanding of how different segments in the public differ by attitudes, knowledge and behaviour. This, in turn, helps ensure that our policy and programme development is responsive to these different segments within the broader population.

While other research studies have examined public perceptions of data in health and social care, we wanted to specifically examine how different segments of the public differ in their attitudes, and what beliefs and behaviours may influence this.

With this research, the insights we have discovered will allow us to:  

• conduct large-scale public engagement into data policy and programmes - by better understanding how people think and feel about data in health and care, we will be able to design a comprehensive programme of large-scale public engagement, and better respond to people’s feelings and concerns
• meet NHS England’s duty of transparency by better understanding what information people want and expect regarding how their health data is used, and where they would like to find it
• understand how to support people in making informed decisions around data use in health and care by developing understanding of common misconceptions, concerns and worries, and where people see the most value in data use

These findings are overall findings from a quantitative survey of 2,200 people. We have chosen to particularly focus on questions which were instrumental in determining segments. A breakdown of responses by segment is highlighted in chapters 3 to 8 of this report.

Trust in the NHS and institutions

The NHS, particularly at a local level, is the most trusted institution of those monitored - both generally and with handling patient data.

The chart below shows trust in organisations, from most trusted to least trusted. It demonstrates that the two most trusted organisations are the NHS (72%) and universities and research institutions (67%) - 35% of the public trusted pharmaceutical companies, with lower trust shown towards national and local government, tech companies and the news media.

The chart below shows trust in organisations with patient data, from most trusted to least trusted. It demonstrates that more people trust the NHS to handle their patient data (72%) than any other type of organisation.

Generally, people are happy for the NHS to use their own data, particularly to improve their own care.

The table below shows that:  

• a majority of people agree that they are happy for the NHS to use their patient data to improve their own care (94% either slightly or strongly agree)
• a similar number agree that they are happy for the NHS to use their patient data to improve the care of others (89% either slightly or strongly agree)
• there are more moderate responses towards the NHS working in partnership with companies to improve my care, 24% strongly agree while 49% slightly agree 

There are some concerns around the sensitivity of, and wider access to, their data.

The chart below shows people's feelings towards information within their medical record. We specifically asked people about their individual medical records (such as GP or hospital records) held by the NHS, including personal and medical details.

It shows that:

• a slight minority have information in their medical records that they wouldn’t want anyone else to see
• around two thirds of people wouldn’t want anyone who isn’t directly treating them to have access to their medical records

To help visualise this information more clearly, we have combined responses for strongly agree and slightly agree, and for strongly disagree and slightly disagree. Download the full data set.

We first asked respondents to spontaneously list ways in which they thought we used data. The boxes below show these unprompted responses.

We then gave respondents prompts, asking specifically about their knowledge of how data is used outside of managing their individual care.

This chart shows levels of understanding of how the NHS uses patient data. It shows that:

• the majority of people (58%) definitely knew the NHS used patient data to improve individual care
• there is less awareness of the other use cases, with around 29% of people definitely knowing that patient data was used for population health management, planning and improving services and research

Comfort with the NHS using patient data is also high across the different purposes, with the highest level of comfort for individual care.

This table shows levels of comfort with how the NHS uses patient data.

The majority of people (67%) are very comfortable with the NHS using patient data to improve individual care.

48% of people are very comfortable that patient data was used for population health management and planning and improving services, and slightly less (42%) for research.

The majority worry their patient data might be compromised by cyber attacks, with slightly fewer concerned about human error or the NHS selling their patient data.

The table below shows that:  

• the most common concern people have is that NHS IT systems may be vulnerable to cyber attacks, with 35% strongly agreeing with this statement and 47% slightly agreeing
• people are concerned that the NHS might make mistakes with their patient data (49% strongly agree) 
• half of all respondents either strongly or slightly agreed that they were concerned the NHS would sell data to other companies without their permission

We wanted to understand whether people would like the NHS to contact them about different ways their data was used. We also wanted to understand how they might want us to contact them. 

We will discuss information needs further in the upcoming large-scale engagement on data policy and programmes.

Across these examples, most people had no preference in communication method. This was consistent across the scenarios at around 30 to 40% of respondents. 

For those who did have a preference, receiving information by post (10% of respondents) and text (10%) of respondents were the next most popular.