“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
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.
Earlier this year, the University of Arizona hosted a unique meeting for scientists, policy makers, and law experts to explore the legal, ethical, and policy implications of personalized medicine. The opening keynote was by Dr. Lee Hartwell, 2001 Nobel Prize recipient in Medicine / Physiology and Director of the Fred Hutchinson Cancer Research Center and he invited the audience to consider the role of patients in research. He stated that there was an “increasingly important role for patients in this process” and that scientists currently “rely on trial data, totally insufficient to the problem.” Dr. Hartwell also stated that “when you talk to patients, they want to make a contribution. They would like their medical info made useful to other people. The only thing that keeps them from doing so is the threat of losing their life insurance or losing their job.” The views of pioneers such as Dr. Hartwell are important in medicine and it was energizing to hear such a well regarded figure espousing a philosophy with which we so strongly agree.
The lunchtime speaker was David Ewing Duncan, a journalist whose recent book “Experimental Man” detailed his journey to try and undergo every medical test available to science (including genetics, brain scans, and lab measures) in order to find out more about his health risks and how to live the best life possible. As the cost of genetic sequencing comes down to the mythical “$1,000 genome,” we may one day all take the same journey as Duncan to explore how much of our health outcomes are determined by data accessible to us right now. There will undoubtedly be ethical and moral conundrums along the way as genetic science moves from the specialist clinic to all of us as consumers, but ultimately understanding your own DNA is as much of a right as being able to look in the mirror.
Moving from genotype to phenotype, I gave a presentation in the afternoon about our work at PatientsLikeMe. More specifically, I focused on how our platform allow patients with serious medical conditions to find out where they stand in the context of other patients like them, and how systems like ours might one day be able to help guide them to the most effective treatments to improve their outcomes. Highlights from my presentation are now on our YouTube page.