In 2007 Dave deBronkart was diagnosed with advanced kidney cancer, a disease with a median survival of 24 weeks. Dave’s doctor directed him to an online community of cancer patients called acor.org, where other patients gave Dave some medical advice that ultimately saved his life. After seeing a specialist and receiving two immunotherapy treatments with an uncommon product called Interleukin, Dave’s cancer tumors went down dramatically.
Almost ten years later, “e-patient Dave” is a full time spokesman for the e-patient movement and a founding co-chair of the Society for Participatory Medicine. When he tells his story of beating the odds on the Tedx stage, Dave makes a simple argument – the most underutilized resource in healthcare is the patient.
Dave’s story reminds us that the internet promotes patient health in simple but transformative ways that we often overlook. The majority of our healthcare is actually about taking care of ourselves, and the internet has opened up access to medical information like never before. When we do need medical care from experts, online networks are an important resource that can help patients find the right practitioners and better understand their disease or condition.
http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave#t-956819
Dave deBronkart calls on patients to talk with one another and know their health data
For Dave this all boils down to letting patients play a more active role in health care. He uses the idea of the “e-patient” – equipped, engaged, empowered, enabled – to argue that patients are an underutilized resource. While online patient networks have brought us a long ways by facilitating information sharing, Dave thinks we need easier data access to empower patients and speed innovation. What could we achieve with better access to our own data and the tools for understanding it as patients?
Entrepreneur Jenn Hyatt also makes a case for the internet’s role in promoting patient health, but with a different slant. At TEDMED 2014, she argues that social media is a useful support network for those struggling with mental illness. Using the metaphor of social networks as a “digital Greek chorus,” Hyatt says digital technology can help us overcome isolation without the fear of stigma and repercussions on our daily lives.
Social networks offer the opportunity for us to create mentally healthier lives and societies. In a social network our lives are witnessed. We are visible to others. Our lives have attachment, we are connected to others…. We grow and we change with others. In a world curated social network we have a modern day digital chorus. A digital chorus creates a social space…. Any single one of us can step on to that digital stage and be seen and heard without having to reveal who we are. The stability of community and the mask of anonymity, allowing us to talk about our real fears and shames without guilt and embarrassment.
Through a performance that’s more art than science, Jenn Hyatt reminds us that digital social networks can have mental health benefits as well as empower patients with the information to take more control of their own medical care.