A market based answer to the Care.Data medical records fiasco

Big data has always been important in health care research. John Snow famously used epidemiological data to identify the source of the Soho Cholera outbreak in 1854. Aggregated case reports are used to classify disease and improve our collective understanding of illness so that we can treat it. I myself spent happy hours as an undergraduate researching original contemporary case reports of the ‘insane’ in the 17th century, printed alongside tables of numbers, symptoms and demographic data.

The UK government now wishes to use the 15 + years of highly detailed individual patient GP records for research, by any organisations that wish to use it.

Jeremy Hunt stated in an interview recently that GPs should use public trust to sell the benefits of the care.data programme.

I’ll not dwell on the irony of the current health secretary trying to use the trust in GPs he has consistently tried to erode, nor will I discuss the implications that government doesn’t have enough trust itself to trade for the public’s data!

How complex must it be for government – how can they reconcile individuals’ thoughts on privacy, support for medical research, and trust in the system storing and protecting the data?

Fortunately there is a market answer. Simply invite all those registered with a GP to submit a ‘lowest acceptable price’ for the use of their data over the next 3 years. Make the scheme opt-in rather than opt-out. The government then selects a price point that meets the number of patients they need and pays all qualifying patients this price.

It would even be possible to randomly select a cohort of patients who will be offered much higher prices for their date, to provide a control group for the possibility of the wealthier being less likely to part with their data at the chosen price.

This would be a true consensual trade, and would make both government and individuals aware of the true value of our personal data.

Overheard: a medical ethics expert

On a train to Watford (at about Bushey) I overheard a conversation between an older grey haired gentleman and his female junior as they caught up on the issues of the day.

They were discussing (fabourably) a colleague who was passionate about data and how it an be linked together to generate new conclusions. Understandable. As an IT guy I am often defining, detecting or deducing patterns or extracting data according to patterns and this is indeed very useful in all sorts of circumstances. Naturally their conversation moved on to the challenges of doing this with medical data, not least for reasons of confidentiality. I was familiar with the outline of the anonymisation methods that senior was explaining to junior, having read articles about them in the Communications of the ACM, but I made an effort to stop listening as I realised I was earwigging rather atrociously.

It’s a funny situation around a table on a train. One assumes that the people around you don’t give a fig about your business and you certainly have an expectation that people won’t earwig because your business is generally none of theirs. At the same time you wouldn’t attempt to seduce someone, discuss an embarrassing medical complaint or hatch a plot around the table on a train, because people cannot actually prevent themselves from hearing what you say and could start listening at any moment whether it’s their business or not. Depending on your plot, of course, your hatching of it could very well be the business of the person next to you so – one expects – most people interested in hatching plots would not do it on a train.

Our expert on medical ethics, on the other hand, was dealing with a topic that effects precisely every British citizen and perhaps he could have kept his opinion to himself, rather than impressing it upon his younger female companion in a public place.

This gentleman was harking back to his chairmanship of the “BMA” or some committee of it and in context I assume he meant the British Medical Association. He expressed regret that large amounts of useful data could not be examined by researchers just because the subjects of that data – patients – could not feasibly be contacted to give cast iron consent. He was wondering, entirely openly, about whether “most people” would “agree to some level of data” being shared with researchers. Of course he meant anonymously but he had already described the problem that reverse engineering the identity of that man with AIDS from Milton Keynes is fairly easy because if you know enough about a group of people and it’s a very small group then it’s easy to work out who you mean and though it’s very “complicated” to anonymise the data while keeping it useful some good people are working on squaring that circle. So, jolly well then, perhaps we should set up the NHS records system so that people had to opt out of his data processing scheme rather than opting into it, just like with organ donation. He felt that it was such a shame that his profession was not being treated like adults, that we don’t trust that he does in fact know better than patients about what to do with their medical records.

Oh why, oh why, did I let him get away with saying such a disgusting thing in my earshot. It may in fact have been politer to call him a monster to his face than write a blog post now explaining why I feel that way, but I’m not perfect.

At least with organ harvesting one might make the case that the owner of the organs doesn’t need them anymore and this takes some of the emotion out of the idea that claiming communal ownership of something so uniquely yours is a grim violation of the principle of self-ownership. This man was advocating, in public, the idea that deeply personal information about your life be communally owned and processed for the common good before you are done living, unless you have applied in writing to be left in alone in privacy. The hubris of taking on that kind of responsibility, by default, is bad enough without adding casually that you should be allowed to do so because you know best.

My take is that this is another example of why need, rather than value, is the wrong quantity to measure when making decisions. Just as organs are to be appropriated according to need from people that need not and the unique value and love that might be felt for a persons body is not measured, the data about a life is valued according to the needs of researchers not the value of the data itself.

Money is supposed to be base and materialistic but one can easily imagine a positive role for it here. A free post-internet society might choose a system where patients owned their medical data and were able to select an IT service provider from a market of interoperable services, some of which allowed them to share it if they wanted to. In such a system, I garauntee the price of medical data would be well known and there would be no question at all about how much people would want to share with researchers – it would be pricisely the amount they actively selected to share and the system would suit more or less perfectly the needs of every individual patient. Such a system would treat the patients, not the medical bureaucrats as adults, and place it’s trust in them.

I thought twice about publishing a post sharing the private conversation of a stranger. I would not want anyone to do the same to me, but it seems that what was discussed was a form of a plot. It was the idea to hatch a plot of highly controversial ethical nature and it was everyone’s business including mine. If this person feels that we now know too much about him and someone might work out who he is, perhaps he might reconsider his opinion, or at least get the message that his idea is not okay.