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TEPR's advocacy for online resources includes a story of survival

TEPR's advocacy for online resources includes a story of survival

February 03, 2009 | Healthcare IT News Staff

PALM SPRINGS, CA – The effort to develop social networking tools for healthcare took a personal turn at this week's TEPR+ conference in Palm Springs, Calif.

During Monday's opening session of the Medical Records Institute's Towards the Electronic Patient Record (TEPR+) conference, attendees were introduced to Dave deBronkart, a Nashua, N.H. businessman who recently survived renal cell cancer - and who attributes his victory in part to being an ardent Web surfer.

deBronkart was diagnosed in 2007, at age 57, when a tumor was spotted in his lung during a routine shoulder X-ray. The cancer was later found to have spread from his kidneys to his lungs and other parts of his body. In researching his condition online, he said, he learned that he had about 24 weeks to live.

deBronkart's physician, Danny Sands, MD, of Brigham and Women's Hospital in Boston, had earlier directed deBronkart to the hospital's PatientSite interactive Web site, seeing it as a means of keeping in touch with his patient when  he wasn't in the office (and when deBronkart moved to Minnesota for a few years). Following the cancer diagnosis, Sands connected deBronkart with acor.org - an online network organized by the Association of Cancer Online Resources.

"I lurked for two or three days, listening to what other people were saying, before deciding to post a message," deBronkart said. Within hours of his first posting, he said, he was in touch with other cancer patients, sharing advice and resources.

"I needed to know what my options were," he said.

deBronkart learned of a risky treatment for renal cell cancer using Interleukin-2. He also learned that the side effects to the intravenous treatment were "often severe and rarely fatal." Within days of posting a request for information on acor.org, he said, he received 15 firsthand accounts.

During his treatment in Boston, deBronkart kept friends and family notified of his progress through a page on CaringBridge, an online portal for those undergoing medical treatment. He posted notes, photos and traded messages.

This past year, deBronkart learned that one of the five tumors in his body had vanished and the other four are shrinking. He has begun a blog ("e-Patient Dave"), extolling the virtues of the active, Web-educated healthcare consumer, and will do something this summer that he didn't think he'd live to do - walk his daughter down the aisle at her wedding.

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Bluebirdy says:

February 04, 2009 | 5:38PM GMT

Internet-the great equalizer and empowerer!

I am one of millions of people who are severely health compromised, housebound, and can not get the answers we need from the medical world. Coincentally, I had a final Dr. visit today, researching a 2 month long severely painful health problem. Tests were not showing anything. The doctors did not have enough time to research my problem, so up until the moment I left for the Dr. today, I was on the internet trying to research what this problem could be. We never had that information before, unless we had access to a medical library and were well enough to get there and spend time there. I did that too, before PCs. Now I am able to write to leaders and patients and health professionals online. I am able to blog my opinions and experiences, I am more able to reach the public as those who do public speaking, because very few people can attend a conference. I have friends world wide that I counsel health wise, and with emotions based on chronic pain and illness. I was able to get a pregnant woman in Pakistan an internet webcam conference with a Doctor in Italy, and pay for it for her, because in her country, the Dr. is not allowed to look at her private parts or check her baby. It saved the baby's life. The internet is magic to me. The new technology of doctor visits through webcam for those who live in isolated areas, and the science of doing a surgery through remote control computerized robots is mind-bending...and all due to the internet, and those of us who use it for health purposes. I met Dave deBronkart through our mutual blogs, and I really appreciate him letting the world know what they CAN do, how they CAN stick up for the right in health care, and how they CAN do something to find remedies for their own problems through the internet. This is just the beginning of great changes!
Bluebirdy

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e-Pt Dave says:

February 04, 2009 | 1:03AM GMT

Thanks from an e-patient!

Thanks so much for reporting on our talk! For those who weren't there, Dr. Sands and I spoke on "Illness in the age of E: a case study in participatory e-medicine."

We're both involved in the e-Patient Scholars Working Group, started by the late Tom Ferguson MD. The group now blogs at http://e-patients.net. When it became clear that I had survived my cancer, I literally asked myself what I was going to do with my new life (my "free replay," as I called it) and started a blog, The New Life of Patient Dave. (Not very imaginative, I know.) Then Dr. Sands introduced me to the e-patient movement, I read their white paper (on the top of the e-patient site), and immediately had the answer: I'm fully committed to doing what I can to spread the word about the great work that team has done.

They say "E-patients are Empowered, Equipped, Engaged and Enabled." Recently we're adding Educated. The white paper is a potent document, compellingly summarized in chapter 2, Seven Preliminary Conclusions.

(btw, my hospital (where Dr. Sands practices) is Beth Isreal Deaconess. Right city, right neighborhood, wrong street. :-))

Thanks for mentioning our talk. It's an honor to be here. I hope it changes things! I'm glad to participate, but a harsh reality is that patients have to take time off work to do this. Last week I put out a call for a patients speakers bureau. It's important, because if we want to use these conferences to design a new world of healthcare that makes better use of patient participation, how ya gonna do that if patients aren't in the discussion? Sorta like taking dance lessons with only one person there.

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