Researchers have said they could struggle to find new treatments for conditions dealt with by GPs, from long Covid to depression, if they cannot get access to the patient data held by GPs because of concerns over privacy.
More than 100 prominent scientific and medical researchers have published a statement saying that access to GP health data is crucial. They are speaking out following the announcement that the launch of NHS Digital’s new GP data for planning and research (GPDPR) – a collection of data from practices across the country – has been postponed until September.
Hospital data, which is readily available to scientists, has enabled them to find lifesaving drugs for Covid-19, they say. But to find new treatments for conditions that afflict people in the long term, such as mental illness, cancer, heart disease and diabetes, they also need the patient data that GPs compile.
Martin Landray, professor of medicine and epidemiology at Oxford University, runs the Recovery trial which discovered that the steroid dexamethasone can save the lives of patients with severe Covid in hospital. He said access to GP data could enable them to find out whether the drug could help prevent long Covid too.
Dexamethasone reduces the amount of damage in the lungs, the need for a ventilator and the amount of time you need to stay in hospital. “Could that have benefits on whether patients feel breathless, tired, have headaches or feeling depressed over the long term or the next six months or 12 months?” he said.
Patients with long Covid see their GP. “What we want to do is to be able to combine the data from Recovery with the GP data and understand exactly what those long-term benefits might be,” Landray said.
The delay to the GPDPR is a response to concerns from campaigners and members of the public that private health information could be sold to third parties – Oxford University, which runs the trial, is itself a third party. While the success of the trial might mean that a pharmaceutical company somewhere would make some money, he said, 22,000 lives have been saved by the use of dexamethasone in the UK and about 1 million worldwide.
Researchers said much of the concern is misplaced. “A small but vocal minority of campaigners is behind the circulation of misinformation about this new and improved primary care data collection,” said Prof Cathie Sudlow, director of the British Heart Foundation Data Science Centre.
NHS Digital has been collecting patient data and enabling its use in research for many years, they said. What is new is the addition of GP data. “We are therefore concerned to see the recent portrayal of this as a ‘data grab’,” they said in their statement.
“We believe that the trustworthy use of patient data for research that is in the public interest will enable better care, better treatments and better outcomes for the citizens of the UK.”