Privacy policies around the world shudder: openness philosophy emerges

At the vanguard of patient openness is PatientsLikeMe. In their privacy policy they link to their “Openness Philosophy“, which reads:

“Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.”

It goes on:

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.”

I’m going to keep quoting:

“PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.”

And finally:

“Will you add to our collective knowledge… and help change the course of healthcare?”

Open health information is not the right decision for everyone. But for those who are comfortable and interested in participating in endeavors that promote openness over privacy, opportunities are beginning to emerge. The Personal Genome Project is a kindred spirit on this front (you can watch Esther Dyson, a participant in the project, talk about it on Charlie Rose). Will these endeavors change the world? Maybe. I’m hopeful (which is why I work for the Personal Genome Project).

PatientsLikeMe currently has patient communities for ALS (Lou Gehrig’s disease), Multiple Sclerosis, Parkinson’s Disease, and HIV/Aids. The inspiration behind PatientsLikeMe and the sister organization ALS-TDI is captured remarkably well in the documentary film “So Much So Fast“. Spoiler: you will sob.


3 Responses to “Privacy policies around the world shudder: openness philosophy emerges”

  1. Marie on September 21st, 2007 11:41 am

    Wow. That’s kind of scary. And I’m not even sure why. Nice blog by the way,


  2. Michael Massagli on October 25th, 2007 3:06 pm

    Thanks for shining the spotlight on what we are doing. Our HIV community project is up and running and we are looking for Charter Members. If you are interested, please e-mail us:

  3. Michael Massagli on April 14th, 2008 2:21 pm

    The NYTimes had an interesting story on the company in the March 23, 2008 magazine.

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