Public supports sharing health data for research, survey says

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Research published last week by the Wellcome Trust on UK public attitudes to uses of health data has found that a slight majority (53%) of people would be happy for their data to be used by commercial organisations if it was for research.

Support increased to 60% if it was said that a societal benefit would otherwise be lost. The report also found that academic researchers, charities and organisations working in partnership with the public sector were considered the most acceptable users overall.

However, the survey also found that 17% objected to private companies having access to health data under any circumstances; findings that the report's executive summary says will have '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.'

The Wellcome Trust commissioned Ipsos MORI to conduct a survey of more than 2,000 people which sought to understand the extent to which the public is happy for its health data to be shared with commercial organisations, and its understanding of how that data is used in research.

Workshops with more than 200 members of the public, patients, researchers and healthcare professionals were also carried out and contributed to the report's findings. These found that there was substantial awareness of the benefit of health statistics: '...the public spontaneously mentioned statistical data, such as A&E attendance figures or the number of people living in a certain area with heart disease, and how it could be used to improve services,' the report says. However it found low awareness of how such statistics are produced, and the part that could be played by sharing personal data: '...most participants did not see data – either at individual or aggregate level – as having financial value or other social value.'

Hetan Shah, RSS executive director said: 'Research we commissioned in 2014 identified a substantial ‘data trust deficit’ among the public, including fears about government bodies sharing data with commercial organisations. We recommended that policymakers need to clearly communicate the value of any data sharing they wish to gain support for, and think this report will help navigate these choppy waters'.

The report will also inform a review currently being undertaken by Dame Fiona Caldicott which will develop guidelines for the protection of personal data in healthcare and recommend how patients should be able to opt out of identifiable patient data being used for other purposes.

Ipsos MORI care.data Data privacy Wellcome Trust Data sharing

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