Reg comments37

Brits still not happy about commercial companies using their healthcare data

OK if it's for bona fide research, but not for insurance biz or marketing

A significant number of people remain uncomfortable with commercial bodies accessing their anonymised healthcare records, according to an extensive survey by health charity the Wellcome Trust.

The survey of 2,000 participants showed that a slight majority (53 per cent) of people would be happy for their data to be used by commercial organisations if it was for research.

More than 60 per cent would rather that commercial research organisations have access to health data than society miss out on the benefits these companies could potentially create.

Academic researchers, charities and organisations working in partnership with the public sector were considered the most acceptable users of health data.

However, a significant minority of people (17 per cent) objected to private companies having access to their health data under any circumstances. "This finding has implications for thinking about whether an opt-out should be available for those who do not wish their health data to be used in this way," noted the report.

Just a quarter (26 per cent) support sharing anonymised health records with insurance companies so they can develop their insurance prices, with only 37 per cent supportive of its use for marketing health products.

The report noted that the government's failure to properly consult the public over Care.data has damaged people's trust in such schemes.

It said: "recent developments in health ... widely show that public trust in organisational use and handling of data is at a very low ebb.

"The public and healthcare professionals raised their concerns over the Care.data programme, highlighting significant barriers to health data being accessed and reused, particularly by the commercial sector."

The report said: "Existing research into public attitudes about health data shows that, in general, people are happy for their personal data to be used for research, but it is equally clear that many people feel uncomfortable if a commercial organisation is involved."

Sam Smith, director at privacy campaign group MedConfidential, welcomed the report's findings in the wake of the mishandling of Care.data.

"Data projects, including commercial data projects, can be handled safely, if the people in charge choose to do so. When they don't, patients and citizens get nervous and trust collapses."

Smith said: "Patients care what happens to their data and are wary about how it could be used beyond the context of their own healthcare, and so simple, complete, accessible and truthful explanations to patients are necessary. Otherwise, context collapse is certain, and like Care.data, confidence collapse is sure to follow." ®

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