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Do you have concerns about Care.data? Are you worried that it lacks confidentiality and could risk GPs losing the trust of their patients? Or do you think the potential benefits outweigh these risks
This issue is up for debate at the BMA's Annual Representative Meeting [Motion 356]
Whilst care.data remains the shambles that it is (and nothing to date has changed), then BMA policy should be for an opt-in.
To persevere with supporting an opt-out policy would be to lend tacit approval to a flawed project that is causing doctors and patients much concern.
As long as:
• care.data uploads clearly identifiable information about our patients without *their* consent
• care.data uploads clearly identifiable information about our patients without *our* consent
• Patients remain in the dark about this project
• NHSE and the HSCIC continue their policy of pursuing this project "under the radar" and deliberately ensuring as few people as possible know about it (and therefore as few people as possible opt-out)
• NHSE and the HSCIC refuse to write to every individual, with an opt-out form, akin to the Summary Care Record
• The GP is no longer the data controller for uploaded data held by the HSCIC and cannot control in any way the sale of data in the best interests of our patients
• Patients cannot prohibit the release of aggregate, anonymised or pseudonymised information about them
• Patients cannot control to whom their data is released
• Patients cannot prohibit the release of their data to insurance companies, pharmaceutical companies, commercial organisations, information brokers, organisations that seek to privatise the NHS or government departments
• Patients cannot specify that their data must not be used to further the interests (i.e. profit) of organisations that they are ethically opposed to (such as fast food/soft drinks/alcohol/tobacco, organisations that exploit child labour or experiment on animals)
• Patients cannot specify that their data must only be used within the NHS, or for genuine medical research purposes only
• Patients have no rights under the DPA for aggregate, anonymised or pseudonymised data sold about them, such as the right to know when such sales of their data have occurred (i.e.e to make a subject access request), or to complain to the ICO
• Patients can never find out when data sold to organisations has been sold further onwards (e.g. by information brokers), or have the right to have such data deleted
• Data can continue to be sold about patients, even after they have opted out, emigrated or died
• Patients cannot genuinely change their mind - cannot get uploaded data as held by the HSCIC completely deleted
then the BMA's policy must be for this to be an opt-in.
An opt-in programme should be no more time consuming and diligent as an opt-out policy done properly.
If the BMA continues to support the current omni-shambles, then patient trust in the medical profession, and in medical research in general, will erode relentlessly, and they will not forgive us.
In reply to Neil Bhatia:
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%
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%
More than ½ the adults surveyed still hadn’t heard of care.data.
83% had either not heard of care.data, or had heard of it but was unsure of what it was or knew just a little about it.
I wonder if the 10% who felt their GP should have the decision to share data in this way were expressing a level of trust that their GP would only act in their best interests in determining whether to share data like this or not. If so, I reckon very few realised that their GP has no choice but to share care.data as it is required by law, whether their GP felt it in their patients’ best interests or not.