I thought the following TEDx video from Deborah C. Peel, MD, Founder and Chair of Patient Privacy Rights, would be an interesting contrast with some of the things that Andy Oram wrote in yesterday’s post titled “Not So Open: Redefining Goals for Sharing Health Data in Research“. Dr. Peel is incredibly passionate about protecting patient’s privacy and is working hard on that goal.
Dr. Peel is also trying to kick off a hashtag called #MyHealthDataIsMine. What do you think of the “hidden privacy and data breaches” that Dr. Peel talks about in the video? I look forward to hearing your thoughts on it.
Dr. Peel’s focus, effort and concerns are to be commended. Her passion for what she believes in is exemplary. I have to consider the use of international networking websites that provide a context for the sharing of personal information, like Facebook, where my friends share their health issues and concerns regularly on an open forum. Patients are sharing a great deal of their own healthcare information at will with the public at large.
We as patients have become statistical data. Our data is not really personal any longer, but rather numerical codes and statistics for associated companies to use for marketing and potential profit gains.
I have mixed feelings about my health record. On one hand I would like to know who is getting my information and on the other hand I don’t really care. We are moving toward a government subsidized health care system, where prior medical conditions will not exclude us from medical care coverage, as was the case in the past.
There is something to be said for being open and secret free, so to speak. Do I really care if someone knows that I had two hernia surgeries and a shoulder ligament repair? If I had the unfortunate circumstance to acquire cancer or another life threatening illness would I not want others to know so that they could find courage and hope via my story? We see it all the time via the media. The person who has started a support group, non-profit, written a book to help others with the same illness.
I guess in today’s information age, my concern is not as elevated as Dr. Peels.
Until you are someone and have a vested interest in your personal information maybe it does not matter to you but your ignorance of the use and misuse of medical data in any political system bothers me.
Dave,
I don’t think it’s fair to say that it doesn’t matter to me. Not sure where you got that idea. I do wonder whether anything I can do will impact how it’s used.