Patients must know how their health records are used – and approve any sharing for research

Who really benefits from 'secondary use' of your medical data?


Register debate Welcome to the latest Register Debate in which writers and experts go head to head on technology topics, and you – the reader – choose the winning argument. The format is simple: we propose a motion, the arguments for the motion will run this Monday and Wednesday, and the arguments against on Tuesday and Thursday.

During the week you can cast your vote on which side you support using the poll embedded below, choosing whether you're in favour or against the motion. The final score will be announced on Friday, revealing whether the for or against argument was most popular. It's up to our writers to convince you to vote for their side.

This week’s motion is: Assumed consent is the right approach for sharing healthcare patients’ data, beyond their direct care. Or to put it another way: patient records should be shared with medical researchers on an opt-out basis.

The debate around the benefits of sharing medical data for the greater good versus individual’s expectations of confidentiality and consent, has become heated to say the least over the last year and a half. But if consent is not just assumed, but informed, do we all stand to benefit? Our contributors serve up their own prescriptions, but you get to decide.

Our first contributor AGAINST THE MOTION is privacy campaigner Phil Booth, the coordinator of medConfidential, which campaigns for every data flow in and across the NHS to be consensual, safe, and transparent.

If someone took something from you, and simply “assumed” you were OK with it – without asking or checking, without even telling you or giving you a choice – what would you think?

How would you feel about them; would you believe they were trustworthy, or more like a thief?

Assuming consent for non-care uses of your medical information is not like implied consent for your own care. When you agree to a medical referral or a particular treatment, you expect that the doctor receiving the referral or the facility providing the treatment will be told why you’re coming.

Implied consent for care doesn’t include also handing your most sensitive health details to marketers who sell products to anywhere in the NHS (not just you). It certainly doesn't automatically include you in experiments without your knowledge or permission, whether on the type of treatment you or others get, how well or badly it goes – or, as is increasingly the case, to train AIs or develop mutant algorithms.

Implied consent also doesn’t include using your individual-level data to decide who does and who doesn’t receive which type of care, or whether your local hospital or clinic ends up being closed. For such planning and policy decisions, statistical – ie, genuinely anonymous, not just “anonymised” – data are (more than) sufficient.

Assumed consent for purposes beyond people’s direct care would include all of the above, as well as everything else the Government and NHS used to call ‘secondary uses’ and now more benignly, but somewhat misleadingly, term ‘research and planning’.

Why does consent even need to be assumed?

Those seeking shortcuts or to 'streamline access' via assumed consent are seeking to cut through the fundamental principle that patients and doctors should always know what’s going on

We’ve heard a lot about the success of the Recovery trial over the past two years; a trial in which doctors could easily enrol their patients. It involved no assumed consent – nor implied consent either – as every step was appropriately consented, even during the initial stages of a novel pandemic when uncertainty was at a maximum and when both time and facts were in shortest supply.

As medics and ethical researchers well know, trustworthy use of patients’ data means doing it right.

Claims that prior informed consent is just “too difficult” or “too burdensome” self-interestedly disregard people’s lawful rights to dissent or opt out. And as millions have just shown, it’s unwise to assume that a “Don’t ask, don’t tell” approach will work when, say, attempting to grab patients’ GP data.

Those seeking shortcuts or to “streamline access” via assumed consent are seeking to cut through the fundamental principle that patients and doctors should always know what’s going on. Despite promised safeguards (which have yet to be substantially delivered) and years of “selling the benefits”, it is still the case that not all secondary uses of data are in the best interests of patients, or doctors – though many are clearly highly profitable for someone else.

Which is why every use of patients’ data must be consensual, safe and transparent; everyone must know how their data is used, and have their choices respected. ®

Cast your vote below. We'll close the poll on Thursday night and publish the final result on Friday. You can track the debate's progress here.

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