19 February 2014

Care of my health data [tbc]

This posting was intended to be part of a longer essay. What is currently presented here was written in sections over several days. The piece was then left, abandoned really, as a draft for eighteen months, awaiting my return and completion. I returned to it on 12 June 2015, but completion still has a wait.

-----

I feel comfortable about my GP knowing that my body does not react well to aspirin, but that it tolerates penicillin quite well. Having recently moved house and neighbourhood, I am just starting to settle in with a new GP, who I hope will get to know both me and my body, and in whom I hope to develop some trust. I feel less comfortable that exactly the same medical information is available to any locum doctor and nurse practitioner who might happen to fill in at the medical practice, but recognise that, should I require medical treatment, as I did recently when my shin mysteriously developed cellulitis, I do wish to be prescribed medication both appropriate to, and sensitive to, the needs of my body. However, I should feel a good deal less relaxed about that wider category of medical personnel having access to my personal medical details if, say I had for many years, been prescribed a cocktail of amitriptyline, clozapine and diclofenac; or had recently been treated for an STD; or was taking a daily dose of AZT.

I recall, many years ago, answering the front door to find a primly-dressed woman expecting to come into the house. She knew precisely who I am, who my wife is, and all about our then-young daughter. The woman identified herself cursorily and inadequately, and she had about her an air of presumption that attempted simply to invalidate any hesitation I might have about her. From her manner, I should not have been surprised had she been a police officer. In fact, she was a medical practitioner of some kind, and she demanded to see my daughter. Fortunately for me, my wife and daughter were out at the time, so there was little point in doing anything other than resist the woman's attempted intrusion. Apart from her overall attitude, what made me feel so uneasy was partly that she, a stranger to me, clearly already knew a lot about me and my family, but particularly that she displayed absolutely no understanding that that asymmetrical intimate knowledge about a stranger was likely to be experienced as deeply unsettling and unwelcome.

It is not even that I am especially paranoid. Indeed, recently having relocated to a small village in Kent, UK, I often experience residents from the village approaching me with phrases such as "You're the person who moved into Lynn's house, aren't you?" and "I believe that you are a member of the village ukulele group." These are intended as friendly, welcoming and including greetings, and as invitations to get to know them amicably as people, potentially as friends, with the expectation of reciprocity and warmth. This is a far cry from a coldly clinical medical official who presents in a manner akin to gathering corroborating and incriminating evidence.

In my role as head of a university counselling service for eight years, one of the most difficult and intractable problems I experienced was trying to persuade some of the medical staff in the university to respect counselling confidentiality. So profound was the lack of understanding of those medical staff, and so entrenched was their daily unwillingness to countenance any form of confidentiality that deviated from their own, that it was a contributory factor, albeit one of many, in my desire to move on from the university.

This is not to suggest that all medical personnel in the UK, whether within or outside the National Health Service, treat the care of private information with disdain. However, it is my experience that a proportion of medical staff hold an idea very different from my own about what constitutes 'private'. Indeed, in the context of my physical health needs, few if any parts of my body appear to be considered within my 'private' domain, a point I tolerate but far from like. I guess that, for some medical personnel, it is easy to extend this 'invasion' of my intimate space to include my personal data.

I was horrified to learn on BBC Radio 4 last week (Friday 14 February 2014) that the NHS intends to scoop up all my personal medical records, input them into an enormous database, make that data available to the public sector, including the police, and subsequently to sell that data to commercial organisations. It appears that the government decided to permit this. The data will not be subject to the Data Protection Act. It is called care.data and the data was to be harvested, processed and made available this spring.

There are so many levels on which I object to this project that I feel overwhelmed at the prospect of attempting to enumerate even the most significant aspects. However, it is worth acknowledging that the ostensible purpose of care.data, that is, the principal rationale advanced for its proposition, sounds worthy enough, albeit naive: to utilise an extremely large body of patient data, including illnesses, their treatments, and the effectiveness of those treatments, in order better to develop health policies, health provision, health treatments and their management. For example, it is claimed that, had this data been available in the 1950s, it would have been possible to develop much sooner health education programmes around the practice of smoking tobacco. As a broad principle, I quite strongly approve of the epidemiological approach to understanding the health of a population, and wish that the UK government more readily took notice of it. I believe that the greatest health advances in the UK over the past 150 years have not been open-heart surgery and organ transplants; high-tech diagnostic equipment such as that used in functional magnetic resonance imaging; and expensively-developed medications such as abiraterone, but in the public health provision of clean water and vaccines against the most common infectious diseases, and public health education about germs and infection, about vitamins and nutrition, and about contraception and practices around childbirth. All these latter developments have come about, not as a result of images from scanning electron microscopes, but by looking at what happens to populations. I believe that there is yet much to be learned from epidemiological health research. Indeed, for many years I was happy to volunteer, along with 520,000 other people from ten European countries, in a World Health Organisation study called the European Prospective Investigation into Cancer and Nutrition (EPIC). So why do I object so strongly to care.data?

First, and most obviously, I have not volunteered my involvement in care.data. Unless I choose to opt out, my personal, and to me intimate, medical records will be automatically uploaded into a national database. Second, in contrast to the EPIC study which was absolutely clear in its focus, the purpose of care.data is to make available a large body of data for a wide variety of studies, only the first of which may have been defined, and many or most of which will emerge only once the database has been constructed. For all anyone knows today, in decades to come the data could be used for the purposes of eugenics. Third, it is claimed that the data will be anonymised. However, as the health data of each person is, and is intended to be, specific to that person, a strong understanding of that term is a contradiction. If what is meant is simply that names and addresses will be stripped out, then anonymity can be compromised with ease. We live in times when computer companies earn immense profits by data mining and by constructing digital 'images' of people from the search engine trails they leave like silvery snail trails left overnight on the garden path.