Is  It Right That Information About Me Which Is Not Completely Anonymous Should Be Used Without My Explicit Consent?

If there is a genuine risk of you being identified, of course they shouldn’t. But many forms of research need to count people with particular conditions and the sample needs to be representative of the whole population so they would be distorted if individuals had to consent. What is at issue is information where it would take a great deal of effort to link to an individual. For example to study whether proximity to a main road causes asthma you would need a six figure postcode. But a six figure postcode coupled with age could in many cases allow an individual to be tracked down. So the information has to be kept securely (as secure as it would be in a medical records department) and health professionals would use it only to carry out the count– they would never publish it or allow it to be passed to people who could combine it with other information.

 So Care.Data Is Fine Then?

No. First of all it isn’t under the control of health professionals and it will be released to commercial organisations. Does that statement “health professionals would never……. ” sound quite so reassuring if it reads “politicians, civil servants and reputable commercial companies would never……….”

Secondly when you gather everyone’s data from all over the country into a single national database it becomes a security hazard – it is just too much of an attraction for hackers.

 So I Should Opt Out Then?

No. The Government is making it very difficult to gather this kind of information except through care.data Mass opt out would seriously harm medical research, health service planning and public health.

 Are There Any Other Options?

Yes. We could construct systems where people could opt out of some uses of their data without opting out of others, where samples were used instead of whole populations and where a number of databases were constructed specific to particular purposes. But the Government won’t do that.

 So What Can I Do?

We have designed an opt out form which does stop your data being passed to care.data but at the same time consents to it being used for the kind of purpose we are talking about.

Sign this now and send it to your GP

Circulate it to your internet contacts, friends, neighbours and colleagues and raise it in organisations you are part of like trade unions, churches, Women’s Institutes, etc. Make sure everybody knows about this alternative.

 Opt Out/Consent Form

I object to the uploading of my medically confidential data to care.data.

However I consent to it being released to registered health professionals or Universities for the following purposes

  1. the purposes of the health service (including public health) OR
  2. medical research approved by a research & ethics committee and carried out for publication without creating any commercial intellectual property

but only on the following conditions

  1. It is held under conditions of security which meet the guidelines of the General Medical Council, the Faculty of Public Health and the Society for Social Medicine
  2. It is never published or disclosed in an identifiable form and to avoid this it complies with all guidelines from the General Medical Council, the Faculty of Public Health and the Society for Social Medicine
  3. It operates under the control and direction of a registered health professional or an academic employee of a University
  4. The employer of that individual contractually guarantees that they will not be required to act in an unethical manner
  5. The organisation on whose computer it is held formally accepts the above as restrictions which must be followed in order to avoid breaching the fair processing requirements of the Data Protection Act.
  6. It is erased when the study is complete

I also consent to my general practitioner combining with other local general practitioners for the purposes of facilitating the above uses provided that conditions 1 to 5 are complied with for any database so created, and that its governance arrangements are approved by the Director of Public Health and the Local Medical Committee.

I also consent to my general practitioner obtaining for inclusion in such a database any information that might be held about me by the Health & Social Care Information Centre obtained from other sources, and I consent to data being transferred between local databases in the event that I move house or change practice or that I live in a different area from the one where I am registered.

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2 Comments

  1. pbkwriter says:

    I feel that there is a possibility the NHS England may sell data in the future to commercial groups which I disagree with. I think that the above consent form is complicated for GPs and they may well put it in the pile of no-consent forms that they have anyway?

  2. Neil says:

    Dear Steve

    There is no alternative opt-out.

    This form won’t work. Your data will be uploaded to the HSCIC and you “wishes” and “stipulations” will have no effect. Or your data won’t be uploaded at all.

    It’s all or nothing.

    My suspicion is that your GP will either:

    1) Ignore this letter, since it is nonsensical

    2) Opt you out as per current protocols, which will ensure that no data whatsoever gets uploaded to the HSCIC.

    He/She cannot do anything else but add the code or not.

    You are wasting you’re time I’m afraid.

    Neil
    care-data.info

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