Medical records: please release them, let them go
With the voluntary releasing of medical records, people can play as active a role in healthcare as they do in politics
A perfect example is cited in the book Testing Treatments. Imogen Evans et al explain how virtually every child diagnosed with leukaemia in the 1960s died quite soon after diagnosis, but at the time of the book's latest edition (2011) the disease had an 85% survival rate. All of this is due to randomised trials testing new treatments against the current standards of the time, on real patients in a clinical setting. Testing works.
So what's stopping us? In principle it should be pretty easy. But while the randomised controlled trial is the gold standard when it comes to studying health outcomes, it's often considered too much like hard work or too expensive to implement. And there's often more red tape than Santa will be using to wrap his worldwide gift quota this year.
Absurdly, it's easier to choose arbitrary treatments for everyone, than to suggest one treatment for half the people who need it and another treatment for the other half. That makes it a trial, and as soon as you turn your treatment suggestion into a trial, you have to jump through all kinds of administrative hoops. This is what makes RCTs the gold standard rather than the norm. Nobody likes the paperwork, and wearing suits to committees costs a fortune in dry cleaning bills.
The other problem with trials is they often address an abstract idea, rather than outcomes for real people. You don't want to know if one chemical affects another in a petri dish, you want to know whether this will help your Uncle Ted stay off dialysis for another few years. You want to know whether a treatment works in a clinical setting. At the hospital ward you visit Auntie Nelly in, or on the snuffly people in the GP's waiting room. Not in a lab full of people in protective goggles and white coats wielding pipettes.
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