Primary Care News

GP Data for Planning and Research programme “the jargon has to stop when we talk about data”

NHS Digital has released an update on the GP Data for Planning and Research (GPDPR) programme, publishing findings from its ‘listening report’, ahead of moving onto an engagement phase of developing ‘an effective communications campaign’.

The listening report highlights that “it is crucial that patients and the public understand how health data is used and that they have choices about the way their data is used, and we must be transparent about the safeguards we have put in place to keep data safe.” It also notes that the launch of the programme in spring 2021 “was met with concern from some patients, public and professionals” and that it promoted the need to address issues raised, and subsequently the programme was halted in summer 2021.

Since then, NHS Digital has focused on three areas; communications and engagement, data management, access and governance, and opt-outs.

The report, published on the NHS Digital website, includes insights from its listening programme that ran from December 2021 to March 2022. It notes “that 52% of the public are aware of GPDPR and 62% aware of an ability to opt out” and that “opt outs remain seldom understood, with only 12% correctly identifying what a type 1 data opt out does, with a slightly higher percentage understanding what a national data opt out does (18% to 22%).”

NHS Digital also notes that “people were confused by current terminology, with only 17 percent correctly defining pseudonymised data.”

Lorna Branton, Head of Communications for the GP Data for Planning and Research programme, highlighted in a blog post that “patients and GP staff are clear that the jargon has to stop when we talk about data.”

Lorna continued: “We’ve talked to people about their understanding and their feelings about sharing this information to support research and improve planning in the NHS. We’ve talked about de-identification of data to protect people’s privacy and we’ve sought to understand when and why people support using data to improve health and care – and when they don’t.

“And we’ve ended up with a pretty complex picture. There is quite a lot of misunderstanding and, in some groups, there are a variety of concerns about the use of personal information.”

The blog post notes that the “opt out process is confusing”, that it “needs to be made clearer”, and that the listening phase has provided an understanding to inform a public awareness campaign with an aim to provide a clear picture on the data that will be collected and how to opt out.

The next stage of the programme will start the “exploration of attitudes, beliefs and understandings” to co-create messaging and materials that form the public awareness campaign. This phase, the engagement phase, is planned to run from summer 2022.

In the blog post Lorna concluded: “This isn’t a project that we could or want to deliver on our own. I would like to thank all those who have given their time to attend focus groups, fill out surveys, sit on our assurance groups and to provide us with feedback so far. There will be plenty more opportunities to engage with us, so please do.”

NHS Digital are now looking for members of the public who are interested in the topic and want to get involved. You can email the team here.