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Saturday, January 14, 2017

MS PATHS: Be Aware of the Info You Share


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JANUARY 11, 2017     

Would you open your bank account and write a blank check to just anyone requesting something of value from you? Of course not. So, why would we do that with our healthcare information?
I was recently sent an informed consent form from the MS clinic where I am treated, requesting that I allow my clinical data to be used for the MS PATHS (MS Partners Advancing Technology and Health Solutions) study, sponsored by Biogen. I wrote about this upcoming study in 2015, and how there was a lack of details and transparency as to what information would be gathered, and who was going to benefit.  You can read that background story, Dr. Google Will See You Now. Really.
When I wrote that story I never imagined I would be asked to consent my own information to this study. It seems the MS Clinic I go to is one of what is “expected to be 10” sites in the U.S. and Europe. This has posed quite a dilemma for me because I know my neurologist well, and there are plenty of good reasons he can offer as to why I should consent to have my healthcare data made available to the MS PATHS study. I understand the enormous value of big data, but as I read the informed consent form, I became more troubled than ever with this study and the lack of details, so I went looking for more information.
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