By Emma Lagerstedt, Policy and Engagement Manager
“It's got so much potential with the benefits, but it's difficult because sometimes we don't see those benefits in practice. But I think, you know, the way they could use data could really help and transform.”
“Think it's really important at every level because without the local data, it wouldn't feed up to the national picture. And if you want to identify the pockets of difference in what's working and what's not, you need to start at the micro level.”
“You have to trust it in the long run, hope for the best. I mean, that's maybe a silly thing. But you have to try and try see the benefit in the long run.”
These reflections from members of the general public in the UK form part of a new report on the views of members of the public about the use of patient data for planning and population health, published today by Understanding Patient Data.
We worked in collaboration with Qa Research who delivered an online survey and workshops with a representative sample of members of the general public across the four UK nations to understand their understanding of, and thoughts about, the use of patient data for planning.
Why did we undertake this research?
In recent years, there have been a number of studies that have explored public attitudes towards the use of patient data and data sharing, which have shown that people generally know relatively little about how data is used, but are broadly supportive of the health service accessing and using patient data.
However, whilst there is a large amount of research covering how people feel about patient data generally, there is less information available about specific use cases. Many public attitudes studies cover views on secondary uses of data (i.e. uses other than your own individual health investigations and treatment) either only cover specific things like attitudes towards sharing data with third parties or solely data for research, or ask about all secondary uses of data without distinguishing between research, planning or population health. The OneLondon public deliberation in 2020 covered the use of data for planning but highlighted a notable lack in public attitudes research on this and recommended further research into views on the use of data for planning.
We wanted to fill this knowledge gap by exploring:
- What people know and understand about the use of patient data for planning and population health, and how this compares to their awareness of patient data generally.
- What people think about the use of patient data for planning and population health, including whether they support using data for these purposes, what benefits and risks they perceive, and what specific examples of using data for these purposes they think are most important.
- Whether the use of identifiable versus de-identified data makes a different to how people feel about the use of data for planning and population health and what choices people think should be available to them about how their data is used.
To help us understand more about people’s thoughts on this topic from across the UK, Qa Research ran a representative online survey of 1,000 people, and held 4 online workshops via Zoom.
What did we find out?
Level of awareness
- As previously shown in other studies, overall awareness about how the health service uses patient data were low, with a majority (54%) of survey respondents reporting that they knew ‘nothing’ or ‘a little’ about how the health service uses patient data.
- Levels of awareness were lower for the use of data for planning (66%) and population health (68%) compared to research (71%) and individual care (86%).
Support for uses of data for planning and population health
- Participants reported high levels of support for sharing their data for planning and population health, with around 90% of respondents stating that they would support or strongly support sharing their data for each example that was provided.
- The examples which garnered the highest levels of support in the survey were ‘Monitoring patient outcomes to understand how services are performing’ (94%) and ‘Analysing A&E admission data to manage demand for services’ (94%).
- People from older age groups were more likely to support the use of their data for planning and population health.
Perceived benefits and risks
- The potential benefits of using data for planning and population health that were seen as most useful were ‘Speeding up access to treatment and reducing waiting lists’ (87%) and ‘making the healthcare system more efficient and saving the NHS/HSC (Northern Ireland) money’ (82%).
- The potential risks that were most commonly selected as potentially influencing respondents to not want to share their data were ‘someone having unauthorised access to my health data’ (31%) or ‘accidental or deliberate data breach’ (31%).
- For most people, the benefits of using patient data for planning and population health were perceived to greater than the potential risks. Generally, participants in the workshops did not see the potential risks as a ‘dealbreaker’ and were supportive of sharing their patient data to help the health service.
View on identifiability and choice
- A majority of participants strongly or somewhat preferred the use of de-identified data (as opposed to identifiable data) for planning and population health purposes. However, the use of identifiable data was perceived as acceptable as long as appropriate safeguards are in place and the use of identifiable data is limited.
- A sizeable minority (19% of survey respondents) thought the health service should not have automatic access to any type of data for planning and population health purposes.
What next?
UPD will be sharing the findings from this research widely with people working on the use of health data for planning and population health, including policymakers in the health service and civil servants across the four nations of the UK, to influence the way patient data is used for these purposes. We will also be sharing it with healthcare organisations, members of the wider data community, and other policy stakeholders such as patient advocacy groups and think tanks.
Later on this year, UPD will develop this work further by commissioning a follow-up project based on the findings of this research to continue to advocate for trustworthy and transparent use of health data for planning and population health – stay tuned for more!
Let us know what you think
We hope the report helps improve understanding about people’s thoughts on the use of data for planning and population health. We always want to hear your feedback. If you have any reflections or questions about the report, or if you have ideas about how to build upon this work, please do write to us at hello@understandingpatientdata.org.uk.
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