Study shows patients support record sharing

Wellcome Tust report indicates majorities in favour of using patient data for research, but also lingering distrust of commercial organisations

A small majority of people are in favour of their healthcare records being shared by commercial organisations for research, as long as there is a clear public benefit and appropriate safeguards are in place, according to a newly published report by research charity the Wellcome Trust.

Titled The One Way Mirror: Public attitudes to commercial access to health data, it includes a survey of 2,000 people carried out by pollster Ipsos MORI, which showed that 53% supported the idea while 26% objected.

HeritageHealthPrizeThe findings have implications for the use of patient records in the NHS. It has been a controversial issue that has disrupted the implementation of the care.data database of medical records managed by the Health and Social Care Information Centre.

The survey showed that a larger majority of 61% said they would rather see commercial access to health data than lose out on the benefits of research, with 25% being against.

This was qualified with 54% saying they believe the NHS should ask patients' permission before sharing the data, and only 26% supporting the idea of anonymised data being shared with insurance companies to help them set their premiums.

Hard core

A hard core of 17% indicated they did not want commercial organisations to have access to their data under any circumstances. 20% said that they did not trust companies to store their data securely and that health data should not be used for profit.

But the provision of safeguards can affect people's attitudes: the survey showed that, although there is no 'silver bullet' for winning public trust, majorities were in favour of data sharing when named safeguards were in place.

Nicola Perrin, head of policy at the Wellcome Trust, said: “People are naturally cautious about the complexities and sensitivities surrounding their personal information, especially where these may not have been fully explained to them in the past.

“This research showed that in order for people to support this system they need, and want, to know much more about it, and there must be an opportunity for them to opt out. We must make sure that there are no surprises for people about how their data could be used, especially by commercial organisations, and to do this it is critical that the government, the NHS and researchers work together to communicate and engage the public.”

Nuanced picture

The report also draws on a number of workshops from which a nuanced picture of people's attitudes emerged. These included a preference for charities and universities to use the data, an appreciation of a trade off between the risks in sharing and how the public stands to gain, and a view that data on genetic sequencing brings the highest risk but could also produce the greatest benefits.

It follows up with a number of recommendations, including the early provision of safeguards and opt-outs, steps to convey the public benefits in sharing the data, and the creation of codes of conduct that respect the wishes of different groups.

In addition, it says that four key tests should be applied upfront: establishing the public benefit; asking who will have access to the data; what it will be used for; and how it will be stored and regulated.

Sarah Castell, head of public dialogue at Ipsos MORI, said: “Public and patient views were very consistent across the workshops and also chimed with the survey responses.

“The most important thing the public wanted to see in commercial access to their data was a clear public benefit. We saw a notable level of enthusiastic engagement with the subject at our workshops and an increase of trust the more people knew about the subject.”