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Finding Support in an e-Patient World

You’re part of a healthcare 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 marvelous 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.

In this new video episode of My Fabulous Disease, I attend e-Patient Connections 2011, a conference devoted to showing healthcare 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, so this new episode sidesteps most of the e-Patient Conference program and focuses instead on something truly remarkable.

CROP 1I participated in a gathering of twenty 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.

crop 2As much as I tend to view HIV/AIDS as “terminally unique,” there’s something comforting about how much I had in common 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. My fellow workshop 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 (Chron’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 healthcare revolution will be televised on Youtube and Skype and TheBody and Wego Health and HealthCentral and even right here, on My Fabulous Disease.

Please be well, and as always, you’re welcome to use the “share” feature below to enlighten your friends and colleagues. ;]



Barbara LeeReady for your good deed of activism for the day? After scores of unjustified prosecutions of people living with HIV (with long sentences for spitting on cops or not disclosing your HIV status to partners even when using protection), a little sanity may be entering the scene. U.S. Representative Barbara Lee (right) has introduced the REPEAL HIV Discrimination Act to congress. It would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. Now here’s your job to do: visit this site to get the phone number of your elected U.S. representative, and then call to simply say “I support Rep. Lee’s REPEAL HIV Discrimination Act.” Then, treat yourself to some ice cream. Ready, set, go!

Houston-20110922-00054Since “the Berlin patient” Timothy Brown was effectively cured of HIV last year, new energy and enthusiasm has been created around finding a cure for HIV disease, not simply finding treatments. Nelson Vergel (near right, with Timothy Brown) dares to ask “Is a cure for HIV possible in my lifetime?” in his new video blog at TheBody.com. “Everyone can do something now to raise awareness and funds not only for research but also for advocacy and education in this important new and expanding area,” Nelson says.

Redhead dollNo sooner had I posted my piece last week on the demise of my red hair (“The Twilight of the Redhead”) did this news item appear: the world’s largest sperm bank is no longer taking donations from redheads. And the reason is even more bruising: a lack of demand. “There are too many redheads in relation to demand,” the sperm bank’s director said. “I do not think you chose a redhead, unless the partner — for example, the sterile male — has red hair, or because the lone woman has a preference for redheads. And that’s perhaps not so many, especially in the latter case.” It ain’t easy being orange.



By | 2015-02-09T08:29:44+00:00 September 26th, 2011|Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy|14 Comments


  1. Robert Breining September 26, 2011 at 12:21 pm

    You are Fabulous Mark… and I am so glad I got to spend time with you at this conference.. The video captured it all. I love hearing Charity sing.. it makes the hair on my arms stand up.. Her story was by far the best part of the conference. Love and respect to you always

  2. Anthony Johnson September 26, 2011 at 1:21 pm

    Fantastic as usual Mark! I see myself a lot in this and find that it is proof positive of a system that works. This system is in the physical, mental, and psychological support of our community. This community is not just only in our backyard but the globe as a whole. Thanks to social media, we can find the help we need with a simple click of the mouse. Thank you for sharing this with us! :0)

  3. Robert Darrow September 26, 2011 at 2:03 pm

    Keep up your fabulous diseased work. Keep it viral!
    Love you, Bobby

  4. Bennet September 26, 2011 at 2:40 pm

    Fabulous work.

  5. Tiffany Peterson (@Tiffanyandlupus) September 26, 2011 at 2:50 pm

    Words are not enough to express how amazing this post and video are; only tears in mass amounts!

    You truly captured the essence of what each of us a patients are striving towards in health care reform, and I love how you connected each us together regardless of our different illnesses. Together we can indeed!

    I look forward to your next post! <3

  6. Don September 26, 2011 at 3:02 pm

    Poz.com has an iPhone app called iStayHealthy which can be very useful to track your blood work and meds

  7. Jenny Pettit September 26, 2011 at 8:51 pm

    Oh Mark…so, so wonderful. I think I may now be hooked on vlogs – and convinced I’ll never make one:) I will, however, be sharing this everywhere! This is such a gift:)

  8. subversive librarian September 27, 2011 at 4:38 am

    Wonderful video, Mark, both technically and substantively. You have a gift for creating intimacy in places where others might not find it, and this post brings it home.

  9. richard September 27, 2011 at 11:26 am

    What a beautiful video! You are a red-headed gem!

  10. Donna Gore September 28, 2011 at 6:41 pm

    As for “Big Pharma” — It seems like the drugs needed for the most serious kinds of illness are the most expensive, and I have to wonder why. They say “We spend the money on research,” etc. but…..I just can’t help wondering what is the mark-up on some of these drugs.

    I have online EMR and I think it’s wonderful. They have various educational tools linked in explaining the medical terms.

    I can see where the video blogs can be very helpful especially for people who may be isolated, housebound, or whatever.

  11. Sam September 28, 2011 at 11:22 pm

    You always do a great job, Mark. You offer people hope and laughter. I had not heard about the Berlin Patient. Sounds promising. The lady singing opera after lung transpants was wonderfully uplifting. Peace.

  12. Teri Robert September 29, 2011 at 11:25 am

    Wow, Mark! Great job on the blog, and the video is amazing. It was wonderful to meet you in Philly. Let’s keep in touch.


  13. Sara October 1, 2011 at 12:42 pm

    I found your blog from a link on Bennets (ydmv.net). I love the video and I love your attitude. Yup, our conditions kinda suck sometimes but there are some wonderful moments (including the discovery of new friends) as well.
    (You’re right, Sara. Thank you for visiting, and for the kind words. — Mark)

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