Public attitudes about patient data for planning and population health

When asked how much they knew about how the NHS uses patient data, 20% of survey respondents said they knew nothing at all, 34% said they knew a little, 33% said they knew some and 8% said they knew a lot.

Participants were more likely to identify individual care (also known as direct care) as something the NHS uses patient data for (86%), compared to research (71%), population health (68%) and planning (66%). Only 51% of participants correctly identified that the NHS uses patient data for all purposes.

In workshops, very few participants could say how the NHS uses their data, with examples primarily revolving around individual care and research. Workshop participants also found it difficult to define the terms ‘planning’ and ‘population health’, but once explained, they understood the concepts easily.

When asked how familiar they were with different examples of how the NHS uses data for planning and population health, survey respondents were most familiar with examples relating to population health management and risk stratification, and least familiar with examples relating to service evaluation and managing demand for services.

People from older groups, ABC1 social grades and a white ethnic background were more likely to correctly identify the different use cases (individual care, research, planning and population health). However, when asked about specific examples of data being used for planning and population health, those aged 18-34 and people from a minority ethnic background were more likely to say they knew at least a little about each example.

When asked about specific uses of patient data for planning and population health, survey respondents reported high levels of support for all examples, with each one receiving around 90% net support (‘strongly support’ or ‘somewhat support’) and around half of respondents strongly supporting each example. 78% of respondents said they would strongly or somewhat support their data being used for all planning and population health examples.

84% of survey respondents agreed with the statement ‘Generally speaking, I am supportive of the use of patient data in the NHS.’ This could suggest either that planning and population health uses of data are particularly popular, or that people are slightly more likely to lend their support when presented with specific examples of how the NHS uses patient data than when asked about the use of data in the abstract.

Workshops found unanimous support for the same planning and population health uses of data presented to survey respondents. However, a notable minority of participants raised concerns about these uses of data not translating into the expected outcomes in terms of improved NHS services.

When presented with a list of examples of how data can be used for planning and population health, respondents reported similar levels of support across all uses, but there were some differences.

“Analysing Accidents and Emergency (A&E) admission data to ensure the hospital has the right amount of staff and resources available to deliver care” and “Monitoring and evaluating outcomes to understand which services are performing well and which ones need additional support, ensuring patients receive effective care” both received 94% net support.

The example that garnered the lowest level of support was “Analysing data to identify cohorts of people with similar lifestyles or risk factors that may contribute to health conditions and targeting groups of people with different health interventions,” though it is important to note that this example still received 89% net support.

Workshop participants showed more enthusiasm towards the specific examples of how data can be used for planning and population health than the abstract concepts themselves, and examples that participants had first-hand experience of, or that were perceived to be close to them personally, were more likely to be chosen as an important use of patient data. This suggests people respond more positively to the use of data for planning and population health when given tangible examples that are relatable to their personal experiences and needs.

When presented with a list of potential benefits of sharing data for planning and population health, using data to reduce waiting lists and speed up access to treatment was selected by 40% of survey participants as the potential benefit that would have the biggest impact on their willingness to share data, followed by 26% for making the healthcare system more efficient and saving the NHS money.

Workshop participants’ views on the most important benefits of using data seemed to be related to their views of the most pressing priorities for the NHS and the benefits that were most closely aligned to their personal experiences and needs.

When presented with a list of potential risks and asked which potential risk was most likely to make them less supportive of sharing their data for planning and population health, survey participants most commonly selected “someone having unauthorised access to my data” and “accidental or deliberate data breach” (both 31%). This was echoed in workshops where data breaches or data misuse were seen as the biggest risks.

Overall, workshop participants felt that the benefits of using data for planning and population health outweighed the risks, seemingly driven by trust in the NHS and the feeling that there is no way of improving the health service without using data. This was echoed in the survey where 78% of respondents said the benefits outweighed the risks (8% said no, 14% said they don’t know).

The majority of survey participants (54%) said they strongly or somewhat prefer the use of de-identified data for planning and population health purposes, whereas 29% said they had no preference. Only 13% of people said they strongly or somewhat preferred the use of identifiable data for planning and population health. People who reported lower levels of support for the use of data for these purposes were more likely to prefer the use of de-identified data.

The preference for de-identified data was echoed in workshops where it was felt this conveyed fewer risks and a more secure use of data. However, participants were generally comfortable with the use of identifiable data on the basis that the NHS would only use identifiable data when necessary and that safeguards were in place to prevent misuse of identifiable data.

The majority of survey respondents believed the NHS should have automatic access to patient data for planning and population health purposes, with 35% of people saying it should only have access to de-identified data and 30% saying it should have access to both de-identified and identifiable data. 19% said the NHS should not have automatic access to their data for planning and population health. In workshops, the majority of participants were in favour of an opt-out system where the NHS has access to data for planning and population health purposes automatically, but where people have an element of choice as this was considered a core principle.

Awareness of the National Data Opt-Out in England was low among both survey respondents and workshop participants. When presented with different data use cases, respondents were more likely to say that they had a choice in whether data was used for individual care (41%) than planning and population health (32% and 34%, respectively). This suggests low levels of awareness of the policy as patients in England can generally opt out of their data being used for the latter, but not for individual care. This was echoed in workshops where participants were generally unaware of the English Opt-Out policy.

Generally, the research did not find large differences between the views of people from different nations. However, there were a few differences. Please note we have only included differences that were statistically significant here.

When asked whether the benefits of using patient data for planning and population health outweigh the risk, respondents in England were more likely to answer 'no' (9%) compared to the sample as a whole (8%), and respondents in Scotland were significantly more likely to say 'yes' (88% compared to 78% overall).

Respondents in Scotland and Northern Ireland were also more likely to prefer the use of de-identified data to identifiable data for planning and population health, with 67% and 73% of respondents saying they 'strongly' or 'somewhat' preferred the use of de-identified data, respectively. This can be compared to 54% of the sample as a whole.