https://twitter.com/#!/patientslikeme
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http://www.linkedin.com/company/patientslikeme
http://www.flickr.com/photos/patientslikemeinmotion
http://www.youtube.com/user/PatientsLikeMe2008
http://en.wikipedia.org/wiki/PatientsLikeMe

Cheers,
Liz

As a retired private praactice psychotherapist, my experience has taught me that good practitioners keep their patient’s privacy as a sacred trust. If their cases must be discussed, it is without identifyiing factors. I’ve worked for human resoures departments and to my knowledge, no one has had repercussions from their sessions with me.

When fear of loss of privacy stops people from seeking medical care, it iis clearly a dangerous situation.

Second, not dozens of persons responded. Only about a Baker’s dozen in those 24 hours.

Third, the couple of individuals who had no qualms about being an open book also do not have employment concerns. The other few cited eliminating medical error, primarily in an emergency situation.

Fourth, the individuals who overwhelming would not choose to have their entire medical records be open even to only necessary medical personnel cited issues of record accuracy, doctor bias/prejudice, possible subjective opinion prevailing in record, threatened employment, and then general privacy issues.

I’m sorry, the issue is not as simplified as you have attempted to make it. Also, there is the issue of where respondents live and how their country may propose different solutions to improving their healthcare system.

There are many patients, like myself, who did not bother even answering the question posed on the forum.

You say - Although anecdotal, this is quite a finding and reflects what we believe to be the true nature of this debate: There are times for openness and times for privacy. Patients simply want control over when each is employed.

I say - you see in the responses what you wish to see. The discussion was not initiated on the issue of “openness” and it certainly was not focused on patients “sharing” with other patients or their family/friends.

It’s better not to mix issues and discussions here.

Thanks for sharing your story. It may inspire others who are on the fence about sharing their conditions with their co-workers. That direction isn’t for everyone, but I suspect there are many more people like you out there.

David

It has been very educational and useful for everyone concerned as well as myself.

I don’t feel isolated, and my friends and coworkers are more confortable around me.

Thanks for your comments. Our goal at PatientsLikeMe is to use this information to help create new evidence to help patients and their health care teams collaborate on the best treatment plan.

With more people like you, we will achieve this mission.

David

Thanks for these resources. I think people should have as much information as possible about the issues of personal health data.

We know where we stand, and are building evidence everyday on the benefits of open sharing of health information with patient controls can help drive healthcare in a positive direction.

David

I analyze polls for a living so I may be especially skeptical (and sometimes enamored) of survey data. “Privacy” is a term that has so many meanings that it’s become meaningless (and I try to resist polling about it) which is why I love Daniel Solove’s taxonomy in “Understanding Privacy” (http://docs.law.gwu.edu/facweb/dsolove/Understanding-Privacy/)

I’ll also put in a plug for two other essays on the topic of health privacy:

Common Framework for Networked Personal Health Information
http://e-patients.net/archives/2008/06/common-framework-for-networked-personal-health-information.html

Health 2.0 and Privacy Lost
http://e-patients.net/archives/2007/12/health-20-and-privacy-lost.html