Part of Public attitudes to data in the NHS and social care
NHS and Privacy Sceptics
Based on our survey responses, about 10% of the population (in England) would fall into the NHS and Privacy Sceptics segment.
I don’t want anyone to access my data because I don’t trust institutions generally
Trust in the NHS and use of data
This group expresses the lowest levels of trust in the NHS and its role in keeping patient data secure.
People in this segment of the population are highly distrustful and likely to be quite vocal based on feeling they know more than they do. The nature of distrust and scepticism is split across two categories: science and data, and government.
Most people (83%) 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. They also express strong agreement (75% in this group) 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* | 28% | 72% |
| Trust NHS to keep patient data secure** | 36% | 83% |
| Understanding different uses of data*** | Low | Not applicable |
| Comfort in use of data*** | Low | 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
32%
from a lower socio-economic background
compared to 24% across England
44%
consume BBC news
compared to 63% across England
78%
This group has a higher representation within the 55-64 year age range, with a lower percentage of degree holders compared to the England average. This segment spends less time online, which is reflected in their lower online confidence. They have a higher proportion caring for a disabled person.
Overall, this segment are less frequent users of NHS services, including GP services. They tend to be lower users across all NHS online services and other health apps.
What we learned
Within this segment, the nature of their distrust and scepticism varies. There are two broad sub-groupings (with overlap):
- Science and data sceptics: ‘It’s not that I don’t trust the NHS per se, just that I don’t believe they can make accurate predictions from data’.
- Government sceptics: ‘Can we really trust the government not to manipulate and use NHS data for their own goals?’
This audience are highly distrustful, but at the same time can be quite vocal and feel like they know more than they do. They also have a lot of conviction in their beliefs and attempts to directly reassure are likely to be met with counter-arguments.
What matters to them
- Highlight value and potential for automated data capture for a defined purpose.
- Focus on anonymisation and de-identification was a vital area for this group. They were particularly concerned about personal details being shared outside the NHS.
- They also had concerns around human error, so were interested in automatic capture using technology, for example.
- Reference or prompt thoughts of COVID/the pandemic.
- Messaging or case studies that suggest you can predict risk from data.
- Mention of third parties without substantiation.
- Prioritising research as the lead use case.
- Case studies that could trigger concerns around potential for human error and false reporting.
Last edited: 8 May 2024 5:19 pm