advocacy ePatient fibromuscular dysplasia FMD rare disease social media #hcsm Medicine X writing storytelling death medicine 2.0 mindfulness relationships stroke technology Mayo Clinic caregiver dying family life mental health patient care publishing advance directive anxiety bucket list depression Buddhism alternative medicine cancer humor rheumatoid arthritis women Buddha health literacy marketing marriage
14 March 2012
Medicine X's Alliance Health ePatient Scholarships
Only a month or so later, a tweet came across my feed from an anesthesiologist and professor at Stanford issuing a call for medical patients to apply for scholarships to attend the Medicine 2.0 conference. The conference would bring together the two seemingly disparate worlds of healthcare and social media. Verghese would be a keynote speaker. I took it as a sign. I applied, and to my great delight, was selected to be one of a handful of patients to join the medical innovators, social media facilitators, and creative minds coming together to dialogue about how to improve medicine as we know it.
Going to Medicine 2.0, I already knew several interests I wanted to explore. Despite being a 30-something, I had largely resisted the whiles of Twitter and Flickr, used Facebook mainly to keep up with friends and family (even though I managed two Facebook pages for my employer), and maintained a blog more as a personal journal than as a form of outreach. I wanted to learn more about how these social media forms could better be used and, given my medical interests, how they could be tied in with healthcare. The concept seemed so foreign to me. I'd been impressed when I could find an email address for a doctor, much less actually send the doctor an email and get a response. Medicine 2.0 introduced me to the world of participatory healthcare in which doctors not only had email addresses but in which they actively sought out and interacted with patients via social media. Furthermore, these interactions were affecting in-office visits as patients used applications on their smart phones and tablets to self-track things like blood pressure or glucose readings. A virtual Pandora's box had been opened, and my world was changed.
Given the ideas and the tools, I began to see how I could affect my own influence on healthcare through social media. Free social media platforms were the perfect means by which to share my story and connect with other patients, which for me had been nearly impossible provided the rarity of my diagnosis——intimal fibromuscular dysplasia. Thanks to the Mayo Clinic, a healthcare and social media leader, I connected with my first fellow patient on the hospital's message boards. Thanks to all that I learned and the inspiration I gained from Medicine 2.0, I began a social media-based group called FMD Chat so that fellow fibromuscular dysplasia patients could more easily connect with one another. FMD Chat incorporates Facebook, Twitter, Google Plus, and a blog to facilitate peer-to-peer interaction and spread awareness of what it means to live with the disease. To be able to provide patients with this experience and add to the dialogue has given me a sense of purpose and a way to turn a potentially devastating diagnosis into something good.
All this goes to show that patients can, do, and will continue to influence healthcare in ways great and small——and every contribution is, in its own way, meaningful. Patients' attendance at medical conferences is therefore becoming a new normal. Those who already are activists within their disease communities should seize opportunities such as those provided by Medicine X's Alliance Health ePatient scholarships to attend conferences and learn how to best use social media to provide support; those who are not yet activists should seize such opportunities to learn how to get involved. The word activist may seem daunting to some. Let it not be. An activist is one who is active within his or her own family or local community as well as one who takes part in national organizations and shares his or her story on an international level. An activist is, at the most basic level, someone who cares. An ePatient activist is someone who cares about medicine——be their interest in technical research or caregiving, hospital design or disease awareness, advance directives or doctor-patient communication——and how medicine impacts the lives of patients and providers.
The application deadline for Medicine X's Alliance Health ePatient scholarships is March 15. Apply. Learn. Get involved. Make a difference. Show that you too care.