honestlyreal

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.

Bear with me here.

Lots of agitation at the moment about the prospect of our health records being flogged to the highest bidder and scattered to the four winds in the interests of progress and profit.

So here’s a thought to chew on: how are we so sure they are actually our records?

What are these records, anyway? A gathering of facts – of some very personal facts for sure – my weight, my addictions, my phobias, my illnesses. But it’s also a record of my transactions, medical interventions, successes and failures.

And that latter aspect takes us, in this contorted line of reasoning, to a more complex place than merely a collection of details about me.

For transactions have two sides. Givers and receivers. Ministers and ministered. To choke off the supply of feedback on interventions is to poke a stick in the eye of rationality and science, surely?

There’s a ready assumption that it’s “my record this” and “my record that” – but what if we were to reframe this? What if we were to accept (after a huge public thrashing-out that has shown no sign of taking place so far) that by receiving we also have to give? That the quid pro quo of that new medication is the giving up of that transaction, of its success or failure, so that others may learn, and that we all may benefit? Thus science would march onwards with its boots reinforced by the tough leather of real-world evidence.

Of course those two constructs I mentioned above: facts about us, and about our transactions, can’t be neatly separated like that. To make sense of my intervention you have to know about my underlying condition. Evidence of interaction may not have much meaning without a historical context. So while it may be more palatable to argue for the sharing of intervention experiences for the greater good, pieces of the “us” stuff will inevitably be attached.

But pause for a moment – consider what the debate about personal data would look like were we to acknowledge that just because something is about me, it isn’t necessarily of me.

Insistence on opt-outs from data collection would start to look like an act of selfish resistance, a dogmatic adherence to an ideology of paranoia, a one-way street in terms of the flow of benefits. Yeah, give me the treatments, but don’t expect to be able to learn anything based on the outcomes.

Deanonymisation (the jigsaw rebuilding of supposedly laundered data to reidentify personal records) would start to look less like an absolute evil, and more an equivocal risk to be weighed against benefits. See those benefits of sharing as benefits to us all, and the harsh black and white of much of the debate around rights and records melds to a rather more nuanced sea of greys.

This is hardly a popular line of thought. But I think it merits a bit more of an airing. Where else would you expect to preserve such transactional asymmetry? What is so sacrosanct about our physical existence that makes it right to fight against information sharing when this may act against the rational interests of our collective societal body?

Having set your stall out against data sharing or anonymisation, or in favour of informed consent to share, are you still so sure of the moral rock on which you’ve built it?