For immediate release – Wednesday 25th June

The BMA’s Annual Representatives Meeting voted this morning for the controversial care.data scheme to be “an opt-in system rather than an opt-out one”.

All five parts of motion 356 [1] were carried:

* 356. Motion by the Agenda Committee (motion to be proposed by the Suffolk Division)

That this Meeting agrees that the care.data system should not continue in its present form as:

i. it lacks confidentiality and there is a possibility for individual patient data to be identified
ii. it carries the risk of GPs losing the trust of their patients who may feel constrained in confiding in them
iii. the future potential users of the data are not well defined
iv. it should be an opt-in system rather than an opt-out one
v. the data should only be used for its stated purpose for improving patient care and not sold for profit.

This follows polling from Ipsos MORI, commissioned by the Joseph Rowntree Reform Trust Ltd [2], that shows half of the population (51%) say they have never heard of the care.data scheme. The survey also shows that while 27% of the public would support an opt out approach to sharing of their medical records, 40% think it should be opt in (although 10% say that it would be fine to use their data without their knowledge or consent).

Phil Booth, coordinator of medConfidential [3], said:

“The democratic body of the medical profession has voted for the care.data scheme to be opt-in. Will NHS England push on regardless, ignoring the views of the people who know best just how vital confidentiality is for patient care?

“What’s needed now is a full inquiry into how NHS England mishandled patient consent into this mess – decisions taken by officials, repeated failures to properly inform the public and professionals and what looks like a collapse in governance under the quango that’s now running the NHS.

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Notes for editors

1) Motions on BMA ARM website: http://bma.org.uk/working-for-change/arm-2014-info/agenda/health-information-management-and-it

2) Topline results now published online; care.data-related questions are Q4 – Q7: http://www.ipsos-mori.com/researchpublications/researcharchive/3407/Privacy-and-personal-data.aspx

3) medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Founded in January 2013, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals.

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential, on 07974 230 839 or phil@medconfidential.org

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