A strong response to the consultation on the "Additional Uses of Patient Data" (e.g. to help planning, research, audit etc) could change the nature of UK debate on data protection and information security . Respond as a patient. Ensure responses from all organisations with which you are involved. Get them to distribute to their employers and members to also reply as patients.
This consultation is being conducted under Cabinet Office guidelines and the results will be published. It is part of the consultation that should have been done before the commitment to the £12 billion NHS National Plan for IT on which Tony Collins has so often blogged and reported. Given current debates on data protection, information sharing, privacy and surveillance, it therefore has the potential to be the most influential consultation this year.
When you visit the site you will note that the consultation workshops are already under way. I attended that in London yesterday. It was great fun as we teased out each others prejudices in a very well stuctured process. We came perilously close to concensus but our consensus might well be very different to that of some of the other groups being consulted. The response to the on-line consultation will therefore be important.
Those who originally commissioned the consultation appear to believe that the way forward is that your annonymised records should be usable, provided that heirarchies of committees and regulators have given permission to regulated academic researchers - but might be allowed an opt out. Pharmaceutical companies and insurers would not be allowed access
I happen to believe almost the opposite. I trust pharmaceutical and insurance companies more than academic researchers, The former can be seriously damaged, even destroyed, by a major breach or error (e.g. thalidomide - whose side effects would have taken even longer to detect under the massively expensive and bureaucratic testing and approval regimes of today). The latter will do almost anything for publicity that will lead to research funding (e.g. the papers on the supposed link between mmr vaccination and autism).
My I believe that my data should only be available if I sign up to "guineapigs - r-us.org" - with my GP's practice collecting £5 when I do. The consent form is quite simple
- No, no, never (but GPs still collect their £5)
- Not unless ... its a condition I might suffer from ... nice Dr so-and-so says its safe ... etc.
- Yes - and let me know anything from research that affects me, so I can take action
- Yes except ... if it involves aninals, feotuses, that problem I asked you to keep confidential etc.
Once I have "joined", I get my number/password/security device and can visit the website: to volunteers for research panels, join patient groups, make donations to medical charities, get discounts on health care clubs and insurance, etc. etc. - but my data is owned by me, under my control and I decide who sees and uses it: the approach of PAOGA and its clients, rather than that of the Secretary of State, who claims to "own" my medical record.
It is a pity that Paoga is currently rebuilding its website otherwise I would also comment on the difference between their approach and that of those running "conventional" social networks.- but I am now rambling about my own prejudices.
The most important point is to visit the consultation website and given them yours. Then tell your friends to do so, Tell your enemies as well. This really is, at least potentially, the msot important consultation of the year. It needs a big response.