Part of Public attitudes to data in the NHS and social care
Disengaged and Health Data Protective
Based on our survey responses, about 23% of the population (in England) would fall into the Disengaged and Health Data Protective category.
I don't understand why the NHS needs my data, so I'd prefer not to share it with them
Trust in the NHS and use of data
While trust in the NHS generally may be low for people in this group, they have a good level of trust in patient data being kept secure.
This is based on low levels of knowledge of why data is needed outside of personal care and the assumption that data is typically personally identifiable information, combined with low use of NHS service and concerns about anyone (in or outside of the NHS) accessing their data whenever they want, without consent.
While 90% of people in this segment 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, only 58% were in strong agreement that it’s important to them to have control over where their data goes and who has access to it. This contrast is most significant in this group but is also a feature of two other groups, Neutral Followers, and Confident Data Enthusiasts.
| Attitude | This segment | England average |
|---|---|---|
| Trust in the NHS generally* | 59% | 72% |
| Trust NHS to keep patient data secure** | 80% | 83% |
| Understanding different uses of data*** | Low | 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%
hold degree level education
compared to 32% across England
19%
are from a black or minority ethnic background
compared to 14% across England
40%
did not vote or voted outside of the main political parties
compared to 37% across England
86%
live in urban areas
compared to 82% across England
Compared to other segments, this group had a similar level of online activity and health service usage. However, they tended to have a lower use of online services, including the NHS App, NHS.UK and accessing online services (such as ordering repeat prescriptions).
In terms of demographic profile, they had a higher black and minority ethnic representation, as well as higher urban representation than other groups. They also had a significantly higher representation in either ‘did not vote’ or in voting outside the major political parties.
What we learned
Within this segment, the nature of their distrust and scepticism varies. There are two broad sub-groupings (with overlap):
- Low service users: ‘I don’t understand why the NHS would want to use and share my data so I’d prefer that they don’t.’
- Personal exposure concerned: ‘I’m concerned about anyone being able to access my data whenever they want – within the NHS or outside of it – and I don’t understand why my data would be shared without my consent’.
Across the segment there is a lack of knowledge about the different use cases outside of personal care and central to reservations about data use is the assumption that data is typically personally identifiable information. Additionally, they exhibit a lack of confidence in the NHS, at both the organisational and individual level.
What matters to them
- Focus on data protection, particularly to understand views between different levels of anonymisation and de-identification
- Reassure who can access patient data with information on legal protections, staff training and independent reviews, and how the data is going to be accessed
- Motivate by highlighting the value of data and potential use cases
- Demonstrate how their data can make a difference - using the outcome of improving services appears particularly motivating
- Language which could be perceived as over the top and highly emotive - can feel like the NHS are pressurising them to consent
- Engagement on different data uses without addressing concerns about data protections and particularly anonymisation of data
- This group have concerns with data being used outside the NHS - engagement needs to focus on understanding mitigations and red lines
Last edited: 8 May 2024 5:19 pm