Patients as Partners in Personalized Medicine

“It’s only when you really get into the experience of being a patient with a life-changing illness, where you’re dealing with the uncertainty and the process, that you start to learn things.  You start to learn that the experience you’re going through – the pain you’re suffering, or maybe a side effect or something that worked – will never benefit anyone else because no one’s writing it down.”Jamie Heywood

Recently we’ve shared two great interviews conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis (MS) patient Marcia.

Today we’d like to share another interview conducted by the always thoughtful Andrew Schorr of Patient Power.  This one features PatientsLikeMe Co-Founder and Chairman Jamie Heywood, and it delves into some very interesting questions about the concept of personalized medicine.  Why are patients willing to share their data?  Can the Internet expedite clinical discovery?  What can patients contribute if they are considered full partners in the health care system?  Find out that and more in this insightful discussion.

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1 thought on “Patients as Partners in Personalized Medicine”

  1. Very interesting. I feel very stongly that the medical and pharma communities can learn so much from the patients that live with the disease. It could be a way that treatments and cures can be found because you will have a pool of information to draw from. The trick is asking the right questions. Wouldnt it behoove the pharma companies to set patient websites up during clinical trials to monitor the progress?It would make for better tracking and maybe it would speed the FDA approval process up from 10 years. I am a pulmonary fibrosis patient diagnosed in 2003.

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