My Fabulous Disease
Finding Support in an e-Patient World
A Video Blog
By Mark S. King
September 26, 2011
You're part of a health care revolution in cyberspace, my friends. It's changing the way people find treatment information, relate to their doctor, and support one another. And you're about to meet some of the inspiring people who are leading the charge.
Did you know that 80% of internet users spend time gathering health information? That makes it the third most popular online pursuit, following only e-mail and using a search engine (and yes, that means more than porn. Is your mind officially blown?). The ramifications are enormous for patient empowerment -- and for the companies who want to reach us as consumers.
Episode 38: Finding Support in an e-Patient World
In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing health care how to reach patients online. You may remember from my previous video blog "Should AIDS Activists and Pharma Just Get Along?" that my relationship with Big Pharma is a complicated one, and this new episode sidesteps most of the e-Patient Conference program altogether.
Instead, I focus on something truly remarkable: a gathering of 20 bloggers the day before the conference, all of us living with chronic disease and writing about our experience. Watch the episode, and prepare to be inspired.
The meeting, co-sponsored by HealthCentral and Klick Pharma, was a revelation. Never have I had the privilege of meeting so many online advocates living with other health conditions -- cancer, diabetes, rheumatoid arthritis, multiple sclerosis, lupus, and more -- and hearing about their lives and challenges.
In a day-long session moderated by Digital Health Coalition, the group began drafting a set of values -- sort of a digital health consumer Bill of Rights. It's a work in progress (organizers promise follow up sessions to continue the process) that seeks to define and protect us as "e-patients," such as transparency when it comes to online messages from pharma, or asking that our physicians get savvy enough to email lab results if we want.
As much as I view HIV/AIDS as "terminally unique," there's something comforting about how much in common I had with the other bloggers. Yes, it did occur to me that I was the only person in the room with a condition that could get me arrested for having sex, for instance, but this wasn't the time or forum to announce our differences. What we shared, and what they taught me about being a more effective advocate, was considerable.
I'll let my new friends speak for themselves in the video. Meanwhile, check out their sites, especially if you might be living with one of the conditions they are blogging about. The participants were Eileen Bailey (ADHD), Ann Bartlett (Diabetes), Phil Baumann (Men's Health), Robert Breining (HIV/AIDS), Donna Cryer (Ulcerative Colitis), Dave deBronkart (Cancer), Bennett Dunlap (Diabetes), Lisa Emrich (MS and Rheumatoid Arthritis), Amy Gurowitz (Multiple Sclerosis), PJ Hamel (Breast Cancer, Osteoporosis), Tiffany Peterson (Lupus), Jenny Pettit (Sjogren's Syndrome, Fibromyalgia), Teri Robert (Migraine), Casey Quinlan (Cancer), Rudy Sims (Disability), Michael Weiss (Crohn's Disease), and Kelly Young (Rheumatoid Arthitis).
Finally, those who use the internet (and are discerning about what they find) are far more likely to bring ideas to their care provider, or understand side effects or otherwise take an active role in their care. So keep it up, fellow e-patients!
To paraphrase a golden oldie, the health care revolution will be televised... on Youtube and Skype and Wego Health and HealthCentral and of course right here on TheBody.com.
Please be well, and I hope you'll consider using the "share" feature below to enlighten your friends and colleagues. ;]
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