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Musing on the Interaxon Muse Meditation Headband

"For this calibration, find a comfortable position and take a deep breath". The computer brain interface world is getting int...

Wednesday, October 31, 2012

Let's pool our medical data and use consent in the EHR

This is a brilliant TED talk by John Wilbanks advocating for a voluntary big data commons for medical research. The < website > they have is fascinating from a bioethics/research ethics/consent point of view. Unfortunately, I would have to disagree that such a mechanism is necessary if more people were able to consent to have their medical data released for research through the Electronic Health Record or their Personally Controlled Health Record. I have looked for some sort of venue where citizens could donate their medical data to science, instead of just their mortal remains.
Uploaded by eHealthInfoLab on Jan 5, 2012 "EHR systems offer enormous potential to improve Canada's health system; however, privacy-related information governance issues must be resolved so that personal health information continues to be handled securely, confidentially and in compliance with legal and ethical standards. Joan Roch describes the work of the Canada Health Infoway-sponsored pan-Canadian Health Information Privacy (HIP) Group to resolve these issues. She focuses on privacy issues that emerge as EHR information moves across Canadian jurisdictions, and has developed a series of 'common understandings' to support such movement in an appropriate and privacy-protective manner. Ms. Roch is Chief Privacy Strategist at Canada Health Infoway." And here is the problem for the personal health information flow to medical research - privacy and security regulations. It is not an insurmountable problem, as data de-identification becomes more rigorous, and the mechanisms of online consent become more robust.