Britons who refuse to share their medical records with scientists and drug companies may be putting lives at risk by making it difficult for researchers to spot emerging potential health problems, medical charities said on Monday.
In an appeal to more than 50 million people using the National Health Service (NHS) in England who are being asked if they’d like to opt out of sharing data, researchers said the valuable information could be used to track causes of disease, detect infectious outbreaks and monitor the safety of drugs.
“Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries that can improve patient care and save lives,” said Peter Weissberg, a professor of cardiology and medical director at the British Heart Foundation charity.
Jeremy Farrar, director of the international health charity the Wellcome Trust, described the NHS – funded by taxpayers and one of the world’s most comprehensive health services – as a “unique and incredibly valuable resource for research” that would be impossible without such large, detailed sets of data.
The charities’ call comes as the British government is sending leaflets to 22 million households to explain a change in the way information from medical records will be collected from clinics where patients visit family doctors.
Under the changes, researchers in academic institutions and the pharmaceutical industry will be able to access anonymous and non-identifiable patient data. But patients are also being given the right to opt out if they object to their data being stored in a central repository and accessed by researchers.
There is concern among some doctors and campaigners that the information can never be totally secure and may fall into the hands of hackers or others seeking to sell it to health insurers and drugs companies to target patients.
But Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, said that as long as people are confident their data will be treated with care, competence and consent, most will be “willing to make the public spirited act of sharing their medical records”.
Farrar and others argue that access to comprehensive health data from the entire population will speed up the development of new drugs, and highlight more swiftly any risks from medicines or certain lifestyle habits.
In the 1950s, health data played a major part in uncovering the link between smoking and lung cancer. And more recently, data of children with autism born since 1979 in eight UK health districts helped scientists establish there is no link between the measles, mumps, rubella (MMR) vaccine and autism.
“With the correct and necessary safeguards in place to assure public confidence, our patient records will provide a rich source of important data that can help researchers develop much needed treatments and interventions that can improve and even save people’s lives,” Farrar said.
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