I was thrilled to read a commentary by John Wilbanks and Eric Topol, out in Nature today, titled “Stop the privatization of health data“. (Click here to read a PDF version of the article.)
Tucked on the bottom of the second page of the (PDF version of the) article:
“For instance, in 2014, a woman with type 1 diabetes wired together a tiny processor, an insulin pump and a continuous glucose monitor to automate the regulation of her blood sugar levels. For a small community of patients, the collective use of such ‘home-made’ systems has resulted in improvements that are well ahead of those provided by devices and interventions emerging from conventional markets.1”
(The citation is to the poster that we presented on behalf of the #OpenAPS community at the American Diabetes Association Scientific Sessions meeting last month, with self-reported outcomes from 18 of the first 40 users and builders of DIY artificial pancreas systems)
It’s worth noting that there are now (n=1)*98 users of #OpenAPS, so this “small community” is growing fast: doubling approximately every three months.
Wilbanks and Topol highlight some critical truths in their commentary, and call out another (frustrating) diabetes example to illustrate:
“Although patients can monitor their glucose levels at any instant, their aggregate records are not made accessible to them. And there is no mechanism by which patients or researchers outside the company can gain access to Medtronic’s tens of thousands of measurements.”
I’ve written about this specific example before, in fact: new ‘partnerships’ mean my personal health data is likely shared with IBM for Watson’s usage…but I don’t have access to this data or insights, and am in fact missing critical information and data visualization on my FDA-approved medical device that’s been on the market for years.
The call to action for device manufacturers, regulators, and the medical industry is simple: Give me, the patient, my data that I need so I can safely take care of myself and better manage my diabetes.
Wilbanks and Topol emphasize that this won’t happen “…unless each of us takes responsibility for our own health and disease, and for the information that we can generate about ourselves. When it comes to control over our own data, health data must be where we draw the line.”
This needs to happen everywhere, not just in diabetes. Will you join us in drawing the line?
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