Stroud Against the Cuts

An introduction to Care.data by Stroud Against the Cuts member Hannah Basson:

Over recent months there has been much media attention regarding a new way of collecting patient data.  'Care.data' is an initiative to draw together all the health details of everyone in England in to one place.  This system is not the same as the local systems that your GP and other health providers use.  If your GP, physiotherapist, consultant etc (care team) ask if you are okay with your data being shared with other health professionals, they are referring to systems which merely allow one health professional to share your treatments with another, eg that your GP can see easily you had some treatment from someone in your local hospital so this can have some relevance for the treatment your GP provides – this enables joined-up care and is used simply for you and in your presence.  This data cannot go beyond the care team.

But this is not 'Care.data'. 'Care.data', they say, is designed to allow the NHS to examine nationwide statistics so they can work out what is working well and make changes to those treatments that are not so good. However, we must remember that now there are private companies working under the NHS banner which are very secretive and they are likely to be more interested in your information to increase their profits.
 

How can I opt out? Most surgery websites have forms for you to fill in to opt out of your data being passed on in an identifiable form (although any reasonable person might assume that 'opting out' would prevent any data leaving your GP's surgery at all).  You can also find forms online here at MedConfidential.

An article in the Telegraph on 10^th February stated that "Family doctors who refuse to hand over patient information for a controversial NHS database will not be told what their punishment will be until it is too late to change their minds" and "doctors who intend to rebel against the database have been issued with warning letters which state that failure to hand patient records to the national data-sharing scheme puts them in “breach of contract” with the health service". 

If this sounds like bullying, perhaps that's because it is.  In direct contravention of the H&SC Act, one GP has opted out his entire patient list. In response, the area management team have threatened to terminate his contract.  Dr Gancz says "The logic of this email is that unless I give in to the bullying of NHS England and illegally - as defined by the Data Protection Act and the GMC - release my patients’ confidential information, I shall have my contract to work as a GP withdrawn"

How about GPs as patients? A snapshot survey of about 400 GPs revealed that over 40% plan to opt out of care.data.

So how confident are you in this new system of data harvesting and selling? I could direct you to a hundred articles that all say the same thing – our personal data is for sale and no one knows to whom or in what form – with varying degrees of identification at each level – each article with a less-than-convincing rebuttal from a relevant authority.

However, to be fair, it's not only government bodies and those in private health and with vested interests that are saying all will be fine, those better known for their campaigning for a publicly-owned, fairer NHS and for fighting the 2012 Health and Social Care Act also have something to say in favour of care.data.  Pollock and Macfarlane believe that opting out means data will be inadequate to assess the impact of government policies to privatise the NHS.  They believe that opting out plays in to the hands of the private sector.

Their article is very fair and looks at the debate from all angles. They say "Patients and the public need to make it clear to NHS England that their consent for medical records to be uploaded to care.data is conditional on it not being used for commercial purposes or handed over to third parties such as drug companies and health insurance and health care corporations."

Of course, it may be that the whole project is a waste of £50million

"Board papers drawn up by Department of Health (DoH) officials warn that proposed EU regulations to harmonise rules on data protection would not allow such a system - because they state that individuals must give explicit consent, knowing the specific purpose for which data is being used." (quote from Telegraph article)