The announcement of a new scheme in the UK to use general practitioner (GP) data for planning and research was met with a public outcry last month. But experts believe the reaction to the scheme reflects poor public engagement on the part of NHS Digital, the shared digital service provider for the UK healthcare system, more than any particular risks in the programme. Having delayed the deadline to opt-out of the scheme until September, NHS Digital must now equip patients with the information they need to make an informed choice – or risk hampering life-saving research.
Why was the NHS Digital Data Provision Notice criticised?
On May 12, NHS Digital issued a Data Provision Notice (DPN) announcing a new scheme through which to collect data from general practices in England to improve planning and research. Under the scheme, which replaces an existing data collection programme, NHS Digital plans to collect pseudonymised patient records in order to research the long-term impact of coronavirus and address healthcare inequality, among other objectives. The scheme includes two forms of opt-out for patients – one that prevents NHS Digital collecting a patient’s data from GPs, and another that prevents it from sharing that data with third parties – with an initial deadline of 23rd June.
The DPN was heavily criticised by patient bodies and other industry groups. The Patients Association, the Royal College of Psychiatrists (RCGP) and the British Medical Association (BMA) issued statements explaining the need for transparency, checks and clarity around these sorts of opt-outs.
Despite the outcry, the new scheme is mostly a continuation of long-established practices, explains Nicola Perrin, director of policy and public affairs at the Association of Medical Research Charities. “This isn’t new,” she says. “What is changing is trying to systematise it a bit more across the whole of the NHS, using GP data in the same way, having it all centralised so you can do better research.”
She adds that the second form of opt-out, that prevents NHS Digital from sharing GP data with third parties, has been in place for years. “It works across the whole of the NHS, not just GP data,” she says. “That was the opt-out I think they were expecting people to use rather than focus on [the other] very limited one.”
One of the reasons for the outcry, experts interviewed for this article believe, was the short deadline patients were given. “I think the biggest concern was this feeling that there was a deadline, that people had to have opted out by the 23rd of June,” says Perrin.
This short deadline – which has since been extended to September – gave patients, many of whom are already concerned about healthcare data passing into the private sector, the impression that the scheme was being rushed through without their consent. “The speed at which this was proposed and pushed through has rightfully alarmed many,” says David Brown, senior healthcare analyst at GlobalData.
The importance of engagement
In a survey of UK citizens backed by Understanding Patient Data, a group funded by the Wellcome Trust, UK Research and Innovation and the National Institute for Health Research, 74% said the public should be involved in decisions about how NHS data is used. When asked how the public should be involved, the most common answer was ‘deciding on the criteria by which data should be shared’. “An open and transparent approach is likely the only thing that will ease fears and ensure that the patient data is used to improve society, not just monetise it,” says Brown.
The botched announcement is at odds with previous examples of effective patient engagement, including by NHS Digital itself, says Saira Ghafur, lead for digital health at the Institute of Global Health Innovation at Imperial College London. "There's been such great public engagement that's been done in small pockets," she explains. "And if that was done as part of this announcement, I think people would have understood the benefits of having data out there.
NHS Digital must now use the extended deadline to explain to the public the value of the scheme and the benefits of opting in, argues Jacob Lant, head of policy, partnerships and research at Healthcare Watch England. "Over the next few months we need to see an effective nationwide campaign reaching out to people, so they can make an informed choice about how their own individual medical records are used to support research."If the time is not used wisely, however, the alarm already caused could hinder medical research, Lant says. "In a very real sense, a failure to respond to public concerns about the way their data is used could cost lives in the long term."
Why does NHS Digital want GP data?
Data from GPs gives researchers a greater depth of insight into population health than can be achieved with data from hospitals or clinical trials, says Perrin. "Take health inequalities, you need to be looking at the national picture to understand it [and] looking at ethnic minorities, looking at pregnant women, who often can't be involved in clinical trials for obvious reasons. You can only get that data if you start having a population-level data set and because the NHS has 'cradle to grave' records, it's a phenomenally useful data set if you can use it properly and responsibly."
It can also provide a more effective assessment of new treatments than clinical trials alone, she adds, which only assess the impact of new drugs on a carefully selected group of subject patients. "In the real world, you have people who have multimorbidity," says Perrin. "So somebody has diabetes but they also have a heart condition. How does a drug work with them?" GP data could be used to provide that insight, she says.
A case study by Understanding Healthcare Data illustrates the potential value of GP data, if handled properly. By combining primary care records with hospital data, Diabetes UK and the National Diabetes Audit were able to identify patients at high risk of avoidable amputations. "By looking at the data, they could identify people who were at risk and then target the support teams, whether it's the physiotherapist or the nutritionist, for example, " says Perrin. "They reduced the number of amputations by 80%."