Call for help. Researchers are appealing direct to the public for access to patient data.

Association of Medical Research Charities

Call for help. Researchers are appealing directly to the public for access to patient data.

U.K. Researchers Ask the Public to Share Medical Data

Dan is a deputy news editor for Science.

U.K. medical research charities today urged residents to allow scientists to access patient data from the country’s National Health Service (NHS). Making their plea through colorful advertisements in the national press, the charities weighed in on a raging national debate.

Patient records in NHS—which is free for all and paid for through taxation—are now held by a patient’s general practitioner. But in a few months, doctors will begin sending that data to a central NHS database known as care.data. That information will then be made available, anonymously, to researchers and possibly also to drug companies.

This month, the government will send a leaflet to all 22 million U.K. households explaining the changes and telling people how they can choose to opt out of sharing their data. Medical research charities are hoping that not too many will take up that option, however, and today published an ad explaining how important the data could be to medical science. The charities involved include Arthritis Research UK, Cancer Research UK, Diabetes UK, the British Heart Foundation, and the Wellcome Trust.

"The NHS is a unique and incredibly valuable resource for research, providing insights that just would not be possible without such large and comprehensive sets of data,” said Jeremy Farrar, director of the Wellcome Trust, in a statement. “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."

Some physicians have criticized the database for intruding on the trust between doctor and patient. And civil liberties groups worry that the anonymity of the data cannot be guaranteed. "I believe people will be willing to make the public-spirited act of sharing their medical records with researchers as long as they are confident that their data will be treated with care to protect their identity, competence so that leaks and mistakes will not occur, and used only with their consent, allowing those who do not wish to take part to opt out,” added Sharmila Nebhrajani, head of the Association of Medical Research Charities.

Posted in Europe, Health, Policy