For the past 4 years and 348 days, I have been contributing to an online support group for people with angiosarcoma. My first post was to 8 other people who changed my life simply by responding. They were scattered across the country but might as well have jumped right next to me on the couch the second I realized that they were the only other people in this world who truly understood what I was going through. We are now 3 people away from reaching 2K members. Friends, family, doctors, patients and researchers have come together to greatly improve the lives of people at all stages of this disease.
And so it is that I have come to realize the power of the internet when coupled to the voice of the patient. We run the gamut as a collective group of people who have one mission: Help everyone we can, while we're still around to do it. We can expedite appointments for the newly diagnosed, offer emotional support, fund research, perform research, and get many initiatives underway. And it's great, really great. But it's the tip of the iceburg.
There is so much to learn and am looking for mentors in the space of patient engagement. I am a biomedical scientist who was diagnosed with a rare cancer nearly five years ago. I have only recently become aware of the amazing efforts that others have already set in place to engage patients on many aspects of health and science. For the past several years, I have had my head buried in the details of the cancer research that I was conducting. I was hoping to cure cancer from the bench, but I wasn't entirely convinced that my efforts to publish a few solid papers over the course of a career would have that great of an impact on truly propelling us toward any cures.
So I left the bench, and have just recently taken a position at the Broad Institute of MIT and Harvard as an Associate Director of Operations and Scientific Outreach, where I am hoping to use my experiences as a patient, a patient advocate and as a scientist to help empower patients. How? Step one is to ask for details on what is being done by patients and patient leaders who are already doing this. Where to start? Get a sense of the landscape of where patients are with respect to cancer research. I would love to talk to other people who are leading efforts in 1) Educating patients about cancer research 2) Partnering with patients in order to propel biomedical research in a patient focused manner 3) Using social media to interact with patients in order to ensure that anything I do is in collaboration with patients, and not what I think other patients want/need.