Misinformation on NHS data sharing could scupper vital health research, warn experts

A ‘small but vocal minority’ of campaigners is putting the project at risk, says director of British Heart Foundation data centre

Sharing more GP data would help find treatments and aid research (Getty/iStock)

Misleading information about a controversial plan to share GP patient data is unnecessarily fuelling fears among the public and putting life-saving research at risk, experts have warned.

Health minister Jo Churchill told the House of Commons on Tuesday that the General Practice Data for Planning and Research project was due to start in July but has been delayed until September.

The announcement came after concerns were raised about the project in relation to patient privacy as well as difficulties experienced by patients trying to opt out of the scheme.

A joint statement from 120 medical researchers and experts, organised by Health Data Research UK, was issued on Wednesday, warning: “GP health data are crucial for the planning and provision of health services and to enable research discoveries that save and improve people’s lives.”

In a briefing to journalists, organised by the Science Media Centre, Professor Cathie Sudlow, director of the British Heart Foundation Data Science Centre, said research into a range of diseases, including dementia, arthritis, heart failure and depression, was suffering due to limits on data sharing.

She said a “small but vocal minority” of campaigners were behind the “circulation of misinformation about this new and improved primary care data collection”.

Another expert, from the UK Biobank research project, said the scheme could potentially be “derailed by misinformation”.

Professor Sir Rory Collins, principal investigator and chief executive for the UK Biobank project, added that data on patients in the community “left GP practices years ago”.

GP data is already held by private companies that do not have the same “independent controls and oversight” that exist within NHS Digital, he said.

Meanwhile, people’s concerns about “third party” data access could be misunderstood, experts suggested.

For instance, Oxford University researchers are technically a third party.

Companies like Google would not be able to obtain data for marketing purposes, but could potentially be granted permission to access data for research purposes, for example if the tech giant was attempting to develop technology to help patients with diabetes control their condition.

At the moment, around 1.5 million people have indicated they want to opt out of the project.

But the figure may in part be explained by GPs opting whole practices out of the system.

Asked about GPs who have threatened to remove all their patients from the scheme, Prof Sudlow said: “There have been some GP practices who have by default set all of the patients in their practice to opt out.

“I don’t know how much consultation there has been with all the patients in the practice when that has happened, and the choice here should be with patients, not with their doctors.”

She added: “The new improved data collection system will allow better planning and monitoring of health care for all patients in England, and more robust, reliable and rapid research to benefit the public’s health.”

Sir Rory said that half a million Britons had agreed to share their health data with the UK Biobank, but many are “astonished” that researchers are unable to access their GP records.

He said: “The addition of GP data could substantially enhance the kind of research that can be done in UK Biobank – for example, conditions that typically lead to hospitalisation, such as depression, back pain and asthma, can be studied.

“Many more cases of diseases can be identified, yielding much more reliable findings, but also allowing us to study disease at an earlier stage before it does lead to hospitalisation.”

He added: “If one reads ‘GPs do not want the data to leave their practice’, I’m afraid that that is a fiction – the GP data left the practices many years ago and it is held by commercial IT system suppliers on behalf of the practices.

“You can actually go along and get approval to do research on those data, you can access the data, you can use it to help you recruit patients into trials, you can use it to do all kinds of research – but without all of the checks and the independent oversight that exists with NHS Digital.

“I’m afraid that the consequences of misinformation are that a very carefully thought-through system is being derailed.”