Throughout the pandemic, we have seen first-hand how the data held by the NHS can be an incredibly powerful tool. It has played an essential role in helping to quickly identify those who would need to shield and delivering the largest vaccination programme in the country’s history.
But what about in more normal times? How should the NHS use our data to support the planning and design of services or research ground-breaking new treatments?
What’s the latest with NHS data?
The latest programme, announced by NHS Digital in mid-May, will see data gathered by GP surgeries brought into a central database to make it easier for the NHS and its partners to use it for purposes that go beyond people’s immediate care needs.
However, despite assurances from NHS Digital that they won’t use this information for marketing or insurance purposes, the plans have proven controversial.
To inform the discussions, in June, we commissioned Yonder Data Solutions to undertake some rapid public polling, which we have been using to help shape where the programme should go next.
What we found
- 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 our 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 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.
What we have done with this insight
We have reported our findings to NHS Digital and other key organisations involved. We have also shared questions raised by local Healthwatch on behalf of their concerned local communities.
In early July, we joined an editorial advisory panel, along with bodies including Understanding Patient Data and the Association of Medical Research Charities, to help feedback on the plans on an ongoing basis and shape the communications campaign that will follow. This panel also includes representation from current NHS patients and members of the public.
We have also 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, on making sure we bring a broad range of opinions from patients and the public into this important conversation.
Building trust in how the NHS uses data will require complete transparency and a willingness to take the time to explain what is happening.
One significant area where public confidence could be increased was 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.
We were very 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. We will take the appropriate amount of time – even if it means going beyond 1 September – to ensure that we have engaged properly.”
This was followed yesterday by a formal announcement from NHS Digital putting an end to the 1 September deadline and clarifying that the data collection will only now begin when strict new criteria have been met.
Find out more
Find out more about the new plans to increase protection and strengthen security for GP data collection programme from NHS Digital.
For more detail on the results from our polling or our previous research in 2018, get in touch by emailing firstname.lastname@example.org.