Monday, 28 October 2013

Survey results on a question of consent

Majority of you would willing for third parties to access your personal health information for research. #MSBlog #MSResearch

"Thank you for completing the following survey. The message is clear that the majority of you favor this initiative."

25 Oct 2013
"Some of you who are interested in big data and use of medical records for research will find this article of interest. It has implications for MS research as most clinicians are now collecting outcome data on people with MS.

Comments from the survey
  1. As long as my personal info stuff that could harm me. Or some sort of block for things like social security other info I am fairly willing what's the harm. How else can this puzzle be solved?
  2. As long as the research furthers the understanding of MS. No if the data is used for meaningless research to pad someones CV.
  3. Why not help try and prevent others from going through the same thing?! Everyone should do their bit in trying to help. 
  4. MS is a battle and hopefully, we're all on the same side.
  5. Together we can be strong, whereas individually we are weak.
  6. I don't see the harm in it.
  7. Easy way to support research. Anyway, privacy is an illusion.
  8. While we have "protections" here in the U.S., they are far less effective than we pretend. I've done some work with databases, and to put it simply true anonymity is darn near impossible. 
  9. At my work recently, Paul Ohm gave a presentation about "privacy." He was the outgoing head of electronic data security for the Federal Trade Commission. In it he talked about the gov. of Massachusetts signing a bill allowing all medical records to be compiled and "stripped of personally identifiable information" so they could be used for outcomes research. Long story short, the Federal Bureau of Investigations was at a graduate students house 2 weeks later because she had sent him his complete medical history with every diagnosis ever received, every prescription ever written, etc. That was in the early 90's. Have computers gotten less powerful in the past 20 years? How many times have you hit accept on a user agreement on-line? He estimates it would take 1,000 hours for every man, woman and child in the U.S. to read the ones we agree without reading. 
  10. There is no absolute privacy and hasn't been for decades. If it hasn't hurt me yet, I'd like to think some good research should come of my records being open. I wrote about his presentation at my work:
  11. or you can google Paul Ohm and look at his work.
  12. On an anonymous basis? no problem. (as long as there is no Facebook-login-option.)
  13. I need to look into this issue further, but I am wary of selling NHS information to private companies. This Governments policy of creeping privatisation has made me nervous.
  14. As long as it really is anonymised.
  15. Of course the sharing of medical records has to be executed properly.
  16. Method of data protection must be shared with patients.
  17. NHS related researchers free access but pharmas pay going rate
  18. GCHQ refused. All access.

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