I’m entering into uncharted waters.
One of the major goals of Stanford Medicine X is to bring voices from all health care stakeholders together to work to solve real problems. Academic conferences haven’t traditionally been terribly inclusive of the patient voice.
I want to change that.
My intuition tells me that it isn’t just a numbers problem (we are working on a terrific scholarship program that will help with the numbers problem). I really believe it is also about engagement and interaction between epatients and researchers, technologists, health care providers and all other stakeholders. How might we leverage the patient voice to ignite change in health care? How can Stanford Medicine X help make it happen?
Honestly, I don’t have all the answers right now. But I can tell you that I’m working with an incredible group of people who can help me find them. I’ve created an ePatient Advisory Panel for the specific purpose of seeking out the best minds to help us engineer the patient voice into the Medicine X conference and our initiatives.
Patient, Designer, Blogger
Sean is the designer and developer of Crohnology.com, a social health network for patients with Crohn’s & Colitis. Crohnology lets patients share and learn what treatments work for others, track their health, and meet others near them. Sean runs the SF Bay Area Crohn’s & Colitis Meetup Group (sfibd.org) and is a frequent counselor at Crohn’s & Colitis summer camps where he mentors youth with IBD. Sean blogs about Crohn’s & Colitis and patient-centered health tech at blog.crohnology.com and tweets at @Crohnology.
I’m incredibly inspired by Sean. He is so intelligent, passionate, and articulate about his work. He also tells me when I get it wrong and isn’t afraid to ask me to rethink my decisions (sometimes at the 11th hour) in order to get things right. I’m so honored to have someone like Sean helping Medicine X to achieve its full potential!
“After the day I fainted on a train platform, everything changed. I was thrown into a tailspin of doubt and forced to reevaluate my life,” says Hugo Campos, 45. The two misdiagnoses that followed and the urgent implant of a cardiac defibrillator made Campos realize how crucial it is for patients to engage in their own health care and in shared decision-making with clinicians. In the months that followed, Campos started a blog, founded the ICD User Group and embraced a new world of patient advocacy through social media. Campos is passionate about participatory medicine, connected health and patient empowerment through the use of technology. He also advocates for the rights of patients with pacemakers and implantable defibrillators to gain electronic access to the data collected by their cardiac devices. A native of Rio de Janeiro, Campos moved to the United States in the early ‘90s to study graphic arts. He’s worked in many roles at big and small marketing and advertising agencies in the San Francisco Bay Area. He resides in Oakland, Calif.
There are so many things I admire about Hugo. He is a passionate patient advocate, articulate and engaging speaker, and shining example of how patients can engage physicians in a participatory medicine model of health care. I recently had lunch with Hugo and noted that he also has a talent for eating all his vegetables (something at which I fail miserably)!
Patient, Writer, Blogger
Sarah E. Kucharski, also known as AfternoonNapper, is an award-winning writer, reader, editor, teacher, cynic, comic noir, pragmatist, gardener, traveler, animal lover, wife, only child, foodie, and sports fan prone to afternoon naps (or just naps in general). She lives with a long medical history including triple bypass surgery, a stroke that left her without pain or temperature sensation on her right side, loss of her left kidney, four cerebral aneurysms, a gastric rupture, and a diagnosis of Intimal Fibromuscular Dysplasia, which is a rare version of a rare disease. She blogs about everything mentioned above and then some. Sometimes she’s funny. Sometimes she’s not. Regardless, she’s herself. Kucharski has spent the past 14 years as a professional journalist. She earned her undergraduate degree in journalism from the University of North Carolina-Chapel Hill and her M.A. in Liberal Studies from the University of North Carolina-Greensboro. Kucharski blogs at http://afternoonnapsociety.blogspot.com and helps provide global peer-to-peer support for fibromuscular dysplasia patients at facebook.com/FMDChat.
Sarah is just one of these amazing individuals I meet once in a blue moon and had an instant connection with. I met Sarah several times at the last conference I organized, and each time I felt drawn to talk with her and learn from her. Sarah’s emails always spark my interest and get my creativity flowing. I can’t imagine doing this without her!
Stephen Wilkins, MPH
Patient, Caregiver, Blogger
A consumer health behavior researcher and former hospital marketing executive, Stephen’s role as an e-patient began in 2004 when his wife was diagnosed with Stage 4 Lung Cancer. While both
have been in health care for years, neither of them was prepared for how hard it would be to navigate their way through the health care system. Today his wife is a 7 year survivor and together they work to help others deal with cancer.
In addition to his patient advocacy work, Stephen researches, blogs, and writes extensively about ways providers can do a better job engaging patients and their families in their own health care. Posts from his blog Mind the Gap regularly appear on KevinMD.com, Wall Street Journal On-line, Better Health, Fierce Health-Hospital Impact and the American College of Physicians websites. He has a Masters in Public Health, Medical Care Organization, from the University of Michigan.
Stephen has a sharp and insightful mind focused on helping patients and health care providers work together to improve health. During my last conference, I could always count on his hand in the front row to pop up and ask important questions that advanced the audience’s understanding and challenged speakers to clarify and expand their statements. I’m such an admirer of his blog posts and writing and consider myself extremely fortunate to have Stephen on our Stanford Medicine X ePatient Advisory Panel!
Special Liaison to the ePatient Advisory Panel
I’ve asked our Stanford Medicine X Advisory board member, Mr. Nick Dawson, to work with me and the members of the ePatient panel to help weave patient voices and interactions into the DNA of Medicine X. Nick is passionate about the patient experience as a driving force in healthcare, and I can’t think of a better resource and liasion for the members of our Stanford Medicine X ePatient Panel.
Director of Community Engagement, Bon Secours Virginia Health System