New research http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Public-engagement/index.htm has been published by the Wellcome Trust on UK public attitudes to uses of their health data. The new research in particular addresses the extent to which the public wishes their health data to be shared with commercial organisations, and their understanding of research uses.
The survey element, conducted by Ipsos MORI with more than 2,000 people, 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 if it was said that a societal benefit would otherwise be lost: over 60% said they would rather that commercial research organisations have access to health data than society miss out on the benefits these companies. However, and there remained a significant minority of people (17%) who objected to private companies having access to health data under any circumstances. Academic researchers, charities and organisations working in partnership with the public sector considered the most acceptable users overall. The Wellcome Trust concludes that “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.”
The researchers also conducted deliberative workshops with over 200 participants, including members of the public, patients, research cohort participants and healthcare professionals. The report (PDF: http://www.wellcome.ac.uk/stellent/groups/corporatesite/@msh_grants/documents/web_document/wtp060244.pdf) highlights that the public have limited knowledge about data, and are largely unaware of how data is already being used within the NHS. For example, 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.” However there was low awareness of how such statistics are produced, and the part that could be played by sharing your personal data: “most participants did not see data – either at individual or aggregate level – as having financial value or other social value. Hence they did not think in terms of what they might be offered in return for their health data.”
The Wellcome Trust have stated that http://blog.wellcome.ac.uk/2016/03/09/how-do-people-feel-about-companies-accessing-health-data/ their report is timely to inform an important review being undertaken by Dame Fiona Caldicott, the National Data Guardian for Health and Care. The review is to recommend how patients should be able to opt out of identifiable patient data being used for purposes beyond their direct care http://www.cqc.org.uk/content/secretary-state-asks-cqc-review-nhs-data-security. Natalie Banner, from the Wellcome Trust’s policy team, says “The findings from our research with Ipsos MORI, on a specific and controversial aspect of data use, should help contribute to discussions about how this system should work and – crucially – how it must be communicated.”
Commenting on the findings, Hetan Shah of the Royal Statistical Society said: 'Research commissioned by the Royal Statistical Society in 2014 identified a substantial ‘data trust deficit’ among the public, including some fears about government bodies sharing data with commercial organisations https://www.statslife.org.uk/news/1672-new-rss-research-finds-data-trust-deficit-with-lessons-for-policymakers. We recommended that policymakers need to clearly communicate the value of any data sharing they wish to gain support for, and think this report is greatly welcome to help navigate these choppy waters'.