The statement has been made in light of the care.data initiative, which was delayed due to public concern over sharing data. Public concern over the use of personal health data led to proposed amendments to the government’s Care Bill, which will be presented next week (7 May 2014).
The Society strongly supports the use of personal data for statistical research in the public interest. ‘However it is imperative that the gathering of these insights also respects the rights of individuals,’ it adds.
The short statement outlines four key principles that could help restore public trust:
(1) Transparent accreditation of data uses and data users, potentially making users personally legally liable for confidentiality breaches; (2) Consistent, transparent procedures for researchers to access data for research in the public interest, at designated 'safe havens' or 'safe settings'; (3) An opt-out rather than opt-in basis for sharing GP data, with an accompanying campaign to promote the benefits of sharing data; and finally, (4) Put rules and procedures into place that prevent individuals being identified (a new statutory body is likely to be needed to oversee this).