Unfamiliar and Unsure

Based on our survey responses, about 11% of the population (in England) would fall into the Unfamiliar and Unsure segment. 

This group has one of the highest levels of trust in the NHS to keep patient data secure and have high levels of trust in the institution generally. 

The concepts of how data is kept secure, the principle of a right to privacy, and who has visibility of sensitive information are not always well formed in the minds of people who fall into this segment. 

Some important features of the views held by people in this group include assumptions, expectations informed by low knowledge and hope. 

Most people (80%) 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. Aligned to this is this groups strong agreement that it’s important to them to have control over where their data goes and who has access to it is their strong agreement (84% in this group).

* 5-7 out of 7, where 7 is trust completely

** Combined strongly and slightly agree

*** In comparison to other segments

This segment has a higher representation in older age groups and also tend to have lower confidence online. They tend to be lower users of all online services, spending much less time online or on social media than other segments. This reflected in their low confidence online. They have a higher proportion in a lower socio-economic background and have a much higher number of people with a disability.

This group are slightly lower users of NHS services, but much lower users of online services. This includes NHS services but is particularly prominent with any other health apps or services.

Within this segment there were 3 main areas of concern:

1. Tend to hope that their data is being stored and shared securely but aren’t totally sure.
2. Lack of awareness of ‘big data’ leads to an assumption that all data may be personally identifiable and poor understanding of benefits​.
3. Recognise that they don’t know much regarding NHS data, but life experience has taught them to be cynical of promises without evidence.

Lack of understanding of the subject means that perceived risks can be quite ill-defined or vague.

For example:

• hacking - have heard of friends’ data being hacked (largely through social media) so assume that all data held electronically could be at risk, and credit hackers with exceptional abilities​
• potential for unwanted exposure - awareness that there may be sensitive things on your medical record you want to keep private and these might get shared along with everything else​
• right to privacy - especially for older, a sense that personal information ‘should’ be kept private as a principle (vs concerns about sensitive information)​

What matters to them