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About me, but not of me?

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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?

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6 Responses

  1. Loulouk says:

    One question for me. Would sharing this data mean someone else didn’t need to experience the same experience as me if negative, or could experience the same as me if positive?

    It is…necessary for us to deal with data as 0 and 1 for processing purposes. Let’s not forget that when it comes to health there is more than 0 and 1. There is potentially life changing learning buried in the data.

    Patients are not machine readable. They’re human beings.

  2. Richard says:

    so basically an EU cookie directive for medical records? ;)

  3. Mary Hawking says:

    There is a balance to be made between the interests of the individual for confidentiality and privacy and the state – or the “greater good” – for society, scientific developments – and the pharmaceutical industry.
    I agree that there needs to be a public debate on the subject – and that this is something that successive governments – and other organisations with an interest – have failed to encourage/support.
    Could I suggest you read the report “Fair Shares for All” from the PHCSG (Primary Health Care Specialist Group) of the BCS which deals with this?
    http://www.phcsg.org/documents-to-view-download/

  4. Mark McCartney says:

    Agree there is a balance to be achieved, but this needs more public debate. There has to be a line though in terms of privacy, as this could be extended beyond health into personal financial or lifestyle choices, where would it end?

  5. Feargal Hogan says:

    Interesting take. But my problem with sharing my records with whoever the govt feels like sharing them with, is just that. It’s the assignment of authority and responsibility fir the sharing process to a bureaucracy. That’s such a 20th century solution. Surely there is a more sophisticated, forward looking possibility here. One where the data owner maintains control of his/her data and releases those parts necessary to the researchers on request. That would be a properly 21st century solution.

  6. Paul says:

    Ah Feargal – there you go again, saying they’re “your” records. This argument says that you give up some of those rights the moment you set foot in a socially funded health system.

    Trolling aside… while I admire the concept of subject-managed records, I’ve never seen any proposed solution which even comes close to being usable enough to get the slightest take-up. Add to that the small issue that those with the most complex health records could well be the least likely to have interest or capacity in allocating permissions here and there… A nice idea for the privileged middle classes who can manage this as they would their investment portfolio – but real world? Not so sure.

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