Building trust in how the NHS uses data is crucial says Healthwatch

A Healthwatch (HW) poll carried out because of people’s concerns about the government’s plans to collect and use their GP data, warns that despite people largely trusting the NHS, they lack confidence that companies will be held accountable if they misuse the data.

HW says that though patient data is crucial for the planning of health services – so is building trust in how the NHS uses it. They add:

“Building trust in how the NHS uses data will require complete transparency and a willingness to take the time to explain what is happening.”

To inform discussions, they commissioned Yonder Data Solutions to undertake some rapid public polling in June, which they have used to suggest where the programme should go next.  Among their findings, they said:

• Many people have heard about plans to use patient data. The controversy and subsequent media coverage have led to very high awareness of the programme, with 57% of the 2,005 respondents saying they had heard about the plans.
• There is a lot of misinformation out there. When we tested the official NHS Digital animation explaining the plans only 40% of those aware of the programme said it matched what they had previously understood to be happening.
• People still largely trust the NHS with their data. 83% of people rated it as either “very” or “moderately trustworthy” when asked if they thought the health service would keep their data safe. However, this has fallen from 92% from similar research we did in 2018.
• Willingness to share data appears to have dropped considerably. Only 53% of people said they were happy to share their data to support planning and research. This roughly compares to 73% found during our study in 2018.
• People are not necessarily actively against their data being used. Almost a third (29%) of respondents said they were undecided about whether to opt out or not of the latest plans.  In 2018, when we asked a similar question, only 16% were unsure.
• There is a lack of confidence that companies will be held accountable if they misuse data. Over half of respondents (54%) said they were not confident that companies that misuse data would be fined appropriately.  Yet, 46% said they would be less likely to opt-out (i.e. more likely to share their data) if this was addressed.

HW says it has been working closely with other organisations that focus on understanding people’s views, including the Richmond Group of Charities, National Voices and the Patients Association, and they were encouraged to hear the Minister tell the House of Commons last week that:

“It is important that we get this right. We have heard the concerns and will respond to them….”

In light of the poll findings (shared with NHS Digital) HW suggests:

• One significant area where public confidence could be increased would be around the rules for anyone, or any organisation found to be misusing the data.
• People need to understand who will be able to see their data, how it will be accessed, what it will be used for and what will happen if their data is misused in any way.
• It will also be essential that people are offered a clear, simple and meaningful way to opt out of their data being used if they are not happy with this.