This post will continue to be updated.
medConfidential welcomes the publication of the National Data Guaridan Review of Data Security, Consent, and Opt-Outs and the Government consultation on the findings.
- In practice, it matters most what the Government response and consultation says. Dame Fiona’s Review, while vital, may in practice end up as disregarded as the recommendations of her previous review.
- What is the change patients will see? Will each patient know how their consent choice has been honoured? Will “make informed choices about how their data is used” be made real? “The public is increasingly interested in what is happening to their information” (video 4)
- Being published in weeks where political promises have barely lasted hours after people resigned, and with the current opt out being the gift of the Secretary of State, what basis will the new consent language have? Is it comprehensive?
- “There has been little positive change in the use of data across health and social care since the 2013 Review and this has been frustrating to see.” — Dame Fiona Caldicott
- “The NHS has not yet won the public’s trust in an area that is vital for the future of patient care” – Secretary of State
- Will the National Data Guardian be put on a statutory footing? It was due to happen in the Digital Economy Bill, but the Bill has been published, and it’s not there. Another broken promise from the Secretary of State? The National Data Guardian consultation response is out, again promising legislation.
- If there are two opt outs, the “NHS” and “research” boxes may be overly confusing. Dodgy commercial projects will find an NHS figleaf to sneak in the “NHS” preference, while legitimate and bona fide academics will be left in the “research” box with it’s potentially radioactive commercial examples — this is the opposite of what a quick read by a busy citizen would expect. (page 39 – top right for the commercial project on radiation)
- MedConfidential welcomes the proposal that the opt out will be comprehensive across the NHS. This is an important simplification for patients, unless it is badly mishandled.
- Recommendation 18: “The Health and Social Care Information Centre (HSCIC) should develop a tool to help people understand how sharing their data has benefited other people. This tool should show when personal confidential data collected by HSCIC has been used and for what purposes.”
- Paragraph 1.35 “the opt-out should not apply to all flows of information into the HSCIC” — that’s GP data
- “The Review recognises that the new opt-out should not cover HSCIC’s already mandated data collections, such as Hospital Episode Statistics (HES) data. The Review believes it is important that there is consistency and therefore where there is a mandatory legal requirement for data in place, opt-outs would not apply.” – that’s all data going to most commercial entities.
- Video 4 is of most interest
With a pending consultation, it matters that the people who wish their data is used, and those who wish it not to be used, can both know, based on evidence, that their wishes were each honoured.
There has to be a better way to find out how your data has been used than reading google’s press releases.