What is care.data?

Friday, 21 February 2014 17:09
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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.
 

News February 2014

Care.Data
put on hold There have been several 'listening pauses' regarding new government policies – these have, on the whole, resulted in no real change to address the concerns which have triggered these pauses.  This pause is not to change how data is harvested or how it is used, it is simply to give more time for the public to understand what is being proposed.

Care.data

By now, nearly all  households should have received
a leaflet (link to pdf version) from the Health and Social Care Information Centre (HSCIC)
The leaflet tells you of the benefits of sharing your information, it lists the benefits for the planning and implementing of health services in England.  It informs us that our data will not identify us in person.  For an article which is in favour of the new care.data programme, you might go to
The Nuffield Trust site.
Under the 2012 Heatlh and Social Care act, surgeries must comply with requests for their data to be uploaded to the central database for all patients on their books unless the person has opted out.         

Why Opt Out?

The GP's own news site Pulse, highlights a number of issues with this data extraction, in an article revealing that patient-identifiable data have already been approved on request to several sources, 12 of which are bodies outside of the NHS.  
http://www.pulsetoday.co.uk/your-practice/practice-topics/it/revealed-independent-experts-overseeing-caredata-have-approved-31-releases-of-identifiable-patient-data-since-april/20005572.article#.Uv991rDivcu As revealed through a question to the Health Minister, Dan Poulter, by Conservative MP David Davis, the police can still request patient-identifiable data even if you have opted out. http://www.theyworkforyou.com/wrans/?id=2014-02-04a.185516.h&s=David+Davis#g185516.q0 Both the Telegraph and the Guardian have been full of articles expounding on the details of how our data may or may not be used – and mostly, by a huge majority, how our identifiable data will get in to the hands of those who may not have our health at the heart of their organisations. An insightful article by Shibley Rahman can be read here http://legal-aware.org/2013/01/cui-bono-again-who-exactly-stands-to-gain-from-the-nhs-it-initiative/ raising many concerns about who might gain from our data.   And if you still are not cynical enough, the mere knowledge that ATOS helped develop the extraction tool for pulling our data should raise an eyebrow!


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.

GPs opting out

GPs must upload your data but, if you 'opt out', they then put a code against your name to say that you have not agreed for your information to be passed on to anyone.

An article in the Telegraph on 10th 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". 


 


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)


 

In case you were wondering if I was opting out, I'm with Dr Hadrian Moss who says

"Now I’m not being silly and opting out completely.  I’m quite happy for my data to be shared within the NHS but no way am I letting it go to third parties, even if it’s anonymised.  If high level government officers can leave laptops and USB sticks full of confidential data lying around then how likely is it my data will filter out at some point?*  Not that I have anything to hide, but it’s the principle that’s important, especially when this information could be combined with my shopping habits and sold on to interested parties."

 

 

*Professor Sir Brian Jarman, health data expert, warned that firms could identify patients within a few hours.  Although the information is meant to be pseudonymised (a form of anonymity), Sir Brian said it would be easy to find patients from those details. 

Last Updated on Saturday, 22 February 2014 18:40