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From: Macfarlane, Alison
Sent: 14 January 2014 22:44
To: Ursula Huws
Subject: RE: Your patient records;
It might be better to go to the Information Centre web site and see what it says there rather than read the stuff from medconfidential.org. Here is the link http://www.hscic.gov.uk/article/3525/Caredata. The reason why HSCIC is obtaining coded identifiers is to link people's GP records to their hospital records within HSCIC to get a fuller data given in hospital and general practice, but external researchers, whether funded by government or by research charities will only get anonymised records to analyse for research purposes.
So it is not true to say that 'The government plans to use only semi-anonymised data uploaded from our GP records to pass on (and sell) to charities, researchers and commercial companies.' So they will not be selling identifiable information about people with particular conditions to be used in marketing mailshots.
Anyone who gets the data will have to go through a very lengthy application process. Because of the government's regrettable preference for employing private companies to do analyses, some of these anonymised records will doubtless end up with private consultancies. As they will be charging more than public sector organisations to do analyses, I'm not averse to charging them more for the data than the public sector organisations which I would prefer to see doing the work.
We have to also question whether the opposition is coming from private companies who want to be paid to collect similar data from scratch and in parallel.
Alison
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From: Ursula Huws <[log in to unmask]>
Sent: 14 January 2014 19:20
To: [log in to unmask]
Subject: FW: Your patient records;
Forwarding fyi
You may have just had an innocuous looking white green and blue leaflet through the door which tells you that the NHS would like to 'share' your medical records with researchers and selected other parties. It is not addressed to you, is not sent by your GP and looks like junk mail.
It all sounds as if it is no more than the sharing of perhaps GP records with your consultants, but it goes way beyond this. The government plans to use only semi-anonymised data uploaded from our GP records to pass on (and sell) to charities, researchers and commercial companies. Unless you opt out, you are deemed to be in, though no opt out letter has been included on the leaflet and you are told to discuss with your doctor if you have concerns. There is a simpler way which I urge you to take: go to http://medconfidential.org which tells you more about this scheme and gives you an opt-out letter + form to download which you can simply fill in and post to your GP. Data will start to be uploaded from GP data in March and once it has been uploaded, your opt-out rights have ended.
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