For immediate release – Tuesday 24th June
Before the critical care.data vote at the British Medical Association’s Annual Representatives’ Meeting tomorrow [1], patient privacy campaigners today welcomed statements by Dr Mike Bewick, deputy medical director at NHS England, who told GPs at a medical conference that parts of the Government’s controversial care.data scheme should be ‘opt-in’ only [2].
Latest polling figures commissioned by the Joseph Rowntree Reform Trust Ltd from Ipsos MORI [3] show half of the population (51%) say they have never heard of the care.data scheme. And generally amongst the public, while 27% 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).
medConfidential’s proposed hybrid opt-in/opt-out approach – ‘Local Choice’ [4] – would offer GPs and patients straightforward choices that reflect clear public and professional concern while acknowledging the benefits that may be gained from legitimate research use.
Phil Booth, coordinator of medConfidential [5], said:
“The Information Centre has acknowledged how wrong it was and is moving to restore public confidence. We hope Dr Bewick’s statements indicate a similar shift in thinking by the bosses of NHS England.
“While we all may benefit from genuine medical research, commercial exploitation was never part of the NHS social contract. With such low levels of public awareness and high levels of opposition amongst doctors, we think it is time patients were offered choices that reflect their real concerns.”
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Notes for editors
1) Composite motion to be voted on at the BMA’s Annual Representatives’ Meeting: http://bma.org.uk/working-for-change/arm-2014-info/agenda/health-information-management-and-it
356. Motion by the Agenda Committee (to be proposed by the Suffolk Division)
That this Meeting agrees that the care.data system should not continue in its present form as:
- it lacks confidentiality and there is a possibility for individual patient data to be identified
- it carries the risk of GPs losing the trust of their patients who may feel constrained in confiding in them
- the future potential users of the data are not well defined
- it should be an opt-in system rather than an opt-out one
- the data should only be used for its stated purpose for improving patient care and not sold for profit.
2) Reported in Pulse, 20/6/14: http://www.pulsetoday.co.uk/your-practice/practice-topics/it/parts-of-caredata-should-be-opt-in-only-says-nhs-england-director/20007039.article#.U6RsOrHryK4
3) From the Joseph Rowntree Reform Trust Ltd’s ‘Privacy and Personal Data’ poll, conducted face-to-face with British adults aged 15+ by Ipsos MORI from 25/4/14 to 1/5/14. Data are weighted and the base size is 1958. Full data will be published at www.ipsos-mori/caredata on 25/6/14:
Q1 How well, if at all, would you say you know the care.data proposal?
- Know very well 3%
- Know fairly well 9%
- Know a little 19%
- Heard of but not sure what it is 13%
- Never heard of 51%
- Don’t know 4%
- Know at least a little (net) 31%
- At least heard of (net) 44%
Q2 Thinking about the care.data proposal, which of the following best represents your view on how, if at all, your GP should be able to share information from your medical records with the care.data programme?
- My GP should be allowed to share my data automatically without needing my knowledge and consent 10%
- My GP should be allowed to share my data automatically as long as I know about it and do not object or opt out 27%
- My GP should only be allowed to share my data if I know about it and have given my explicit consent and opt in 40%
- My GP should not be allowed to share my data under any circumstances 13%
- I would need more information to make a decision 7%
- Don’t know 4%
4) ‘Local Choice’ devolves the opt-in/opt-out decision to GPs at practice level, with patients written to with the choice of opting out of ethically-approved research or opting in for all secondary uses. All existing consent choices must be respected.
medConfidential note for BMA ARM, 25 June:
medConfidential note for LMC Conference, 23 May:
https://medconfidential.org/wp-content/uploads/2014/05/2014-05-15-Note-for-LMC-conference.pdf
5) 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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