Tuesday, 22 July 2014

Who 'Cares' about your medical data?

It's time to get serious about a subject brought to my attention by David 'Boro Lad' Raby (top bloke!)
It is something that should be of concern to each and everyone of us living in the UK, and maybe also to all you fabulous people who follow this blog but live on shores further afield.

It concerns something called the Health and Social Care Information Centre (HSCIC) and what they are going to do with the medical information about YOU that is currently held by your doctor's practice.

Here are a couple of extracts from this form which summarise what it is we should be worrying about:
Care Data Form

Details from your medical record will be extracted from the practice in a form that can identify you, and will include your NHS number, date of birth, postcode, gender and ethnicity, together with your medical diagnoses (including cancer and mental health), their complications, referrals to specialists, your prescriptions, your family history, details of your vaccinations and screening tests, your blood test results, your body mass index, and your smoking/alcohol habits. 

Medical staff treating you in GP surgeries, hospitals, A&E and out-of-hours centres will not use, or be able to use, this database. However, the uploaded data is likely to be made available to organisations outside of the NHS, such as universities and commercial organisations. 

So, because other medical staff outside your own doctor's practice will NOT be able to use the data about you that is in the HSCIC, it is pretty safe to conclude that the purpose of extracting data and compiling it in the HSCIC is NOT to improve the medical care that you may receive in the future from other parts of the National Health Service.
Instead, it is evidently a process whereby critical medical data about individuals is being compiled so that that same data can then be sold for 'secondary purposes' outside those relating to medical care.
So what might those 'secondary purposes' be?
Well, the non-cynical may be able to convince themselves that the data, in an anonymised form, will be used by research establishments such as universities to help look for cures to common diseases and ailments…but do the rest of us really believe that?
No, of course we don't.
We all know that medical information such as this will be of immense value to insurance companies (who can use it to create a risk profile of our susceptibility to illnesses such as cancer, diabetes, dementia, etc. and accordingly decide whether to insure us and, if so, what to charge); it will also be useful to those marketing companies who will be able identify patients who are having, say, hip problems and then pass that info onto manufacturers of stairlifts and zimmer frames; or those who are suffering hearing difficulties so that hearing aid companies can give them a ring…you get the drift.

So what can you do about it?
Normally, the answer you'd expect to hear at this stage would be 'not a jot'; however, on this occasion, there is something you can do.
On the form that you can open and download by following this link:
Care Data Form
there is a section you can fill in which tells your doctor that you REFUSE CONSENT for your information to be transferred out of the practice for anything other than medical purposes.
I'm going to fill in my form and drop it off at my doctor's surgery this week.
Can I suggest, unless you actually want telephone calls about pacemakers and junk mail about incontinence pants, you do the same!