Re: Close the loop to show patients the value of taking part in research
I am a willing datapoint in an array of brilliantly constructed experiments that contribute daily towards the incremental betterment of humanity. Sadly, they are for rather trivial ends; Facebook and Google seamlessly perform multiple RCTs on me to see where I click, my SatNav crunches my data to ensure my fellow commuters don't fall into the same traffic snarls as I do, and if Candy Crush crashes then the developers know about it in a matter of seconds.
By contrast when it comes to medicine less than 5% of patients take part in RCTs; the journeys that patients must navigate through the medical system are frequently random, uncoordinated, feature a lot of time waiting in queues, and lack guidance; if a medical intervention I'm using crashes (or crashes me) I have little confidence that useful data will be reported promptly to its manufacturer.
As scientists we know that these two contexts are not exactly analagous; the Declaration of Helsinki doesn't apply to videogames about magical candy, for instance. But in the eyes of consumers, how is it that relatively basic pieces of consumer technology function like magic, while the information systems and scientific disciplines into which have been poured ample resources still wobble along on paper, treasury tags, and arcane rulebooks written in prior centuries? That they have smart phones but dumb medicine does little to inspire confidence in their professionals.
The first step is to close the value loop in patients' minds between what data about them means, what it can do, and what has been done with it. A good example of a virtuous altruism loop has been Sweden's use of a text messaging service where blood donors are sent an SMS when the blood they donated goes to save another person's life - the value proposition is made clear, the loop is closed.
Yes we need to solve a number of challenges; scientific, legal, computational and ethical. But it is design thinking that's needed most to build a new learning healthcare system in which patients are proud to engage - let's build the data loops that make it clear that when you share your data with medical research you're helping others as surely as if you donated an armful of your own blood.
Competing interests: Described on BMJ.com