Part of Public attitudes to data in the NHS and social care
Cautious Data Sharers
Based on our survey responses, about 14% of the population (in England) would fall into the Cautious Data Sharers segment.
Having experience using the NHS and caring for others, I understand the value of data to myself and others, but I worry about the NHS’ ability to keep mine safe
Trust in the NHS and use of data
People in this segment have a sophisticated understanding of information around data security and uses. Their levels of trust in the NHS generally and its ability to keep patient data secure are not as high as in most of the other segments.
They are unsettled by the potential for data to be put at risk.
These concerns are focused around hacking, leaks and sharing data with third parties that are unknown or not trusted.
Most people (89%) in this group would want the NHS to tell them if they were to use their patient data to work in partnership with companies to research the impact of new medicines. This group also express strong agreement (81% in this segment) that it’s important to them to have control over where their data goes and who has access to it.
| Attitude | This segment | England average |
|---|---|---|
| Trust in the NHS generally* | 60% | 72% |
| Trust NHS to keep patient data secure** | 72% | 83% |
| Understanding different uses of data*** | High | Not applicable |
| Comfort in use of data*** | Average | Not applicable |
* 5-7 out of 7, where 7 is trust completely
** Combined strongly and slightly agree
*** In comparison to other segments
Significant characteristics of people in this segment
24%
are in the 25-34 age group
compared to 17% across England
96%
are confident online
compared to 87% across England
Of all segments, this group have the highest level of caring responsibilities
This group have a higher proportion with caring responsibilities (both for children, and for people with disabilities), which is potentially reflective of their age profile. They tend to hold degrees and are from a higher socioeconomic background compared to the England average. They also have a higher representation in terms of online usage, with a similar profile to the Neutral Followers and Confident Data Enthusiasts.
This group are frequent users of NHS services. This includes GP and hospital services, as well as online health services. This segment has the highest use of any online health apps, such as fitness or food apps.
What we learned
This segment has the greatest appetite for information and reassurances.
Their ability to more easily understand information around data security and uses separates them from 'Unfamiliar and unsure'.
There were 3 core concerns raised about how data might not be secure:
- Concern around personal data being hacked by those outside the NHS.
- Concern about personal data being (unwittingly) leaked by those inside the NHS.
- Concern about personal data being shared with third parties you don’t know or trust.
What matters to them
- Motivate with positive messages/stories of how data improves services and saves lives
- Engagement needs to focus on ensuring personal data is safe from hacking and internal data leaks
- This group will be particularly interested in how we govern the use of data for research, we need to test the appropriate level of checks that are in place for researchers to access data
- Using simplistic assertions
- Getting too technical/detailed (such as ‘remotely run analysis, differences between depersonalised and anonymous data’)
Last edited: 8 May 2024 5:17 pm