From
Contents |
Chapter 4
The Surprisingly Complex World of e-Communities
Topics Covered
Sections
- 'Online support communities: as far back as 2001, 34 million people had used the Internet for a medical or personal issue. (The Web was only seven years old then.)
- 'This information needs to be saved! (1995 - the genesis of ACOR, the community that served me so well 12 years later)
- 'Braintalk (1994): An e-Patient-driven Online Educational and Support Community. "We found [early neuro patient] online support groups especially intriguing ... They offered their members more convenient, powerful, and complex information and support than any of the face-to-face groups we had seen." But those groups were on isolated servers; two doctors created Braintalk to bring them together.
- 'Building from the Bottom Up. Braintalk's founders: "Many professional efforts to develop resources for e-patients have taken the traditional 'doctor knows best' approach, providing professionally created content in a top-down manner. 'In these provider-centered systems, patients and caregivers have little or no input or control,' Lester says. 'Yet the communities we'd observed – in which patients had complete control – appeared to be doing quite well without professional assistance.' 'We decided that we would think of ourselves as architects and building contractors,' Hoch recalls, 'creating an online system in response to patient requests.'"
Please think about this: Just last month a friend of mine had a major misdiagnosis turn around completely in 8 hours, with the help of today's Braintalk members – after a hospital full of doctors had completely failed, and had then stonewalled her well-informed questions about the basis for their diagnosis.
- 'Online Groups Supplement, but Don't Replace, Doctors: "Online groups ranked significantly higher than either generalists or specialists for convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping tips, in-depth information and 'most likely to be there for me in the long run.'... Specialist physicians were rated highest for help in diagnosing a condition correctly and for help in managing a condition after diagnosis."
- 'Forgotten Heroes (heroic caregivers): "Family caregivers of those with debilitating, chronic illnesses are the most numerous – and overlooked – health workers of all. There are 27 million in the U.S. alone. They outnumber all other types of health workers combined by four to one." ... "Traditional healthcare all too often leaves friends and families out of illness care. But spouses and other caregivers have so much to offer. Online support communities don't make this mistake."
- 'Putting a Human Face on Medical Information: "Learning you have a new disease can be an earth-shattering experience. One day you're "normal" and the next you're a "patient," perhaps for life. Connecting via an online support group with others who have the same condition can be immensely comforting"
- 'Special benefits for those with rare conditions: "Patients with rare cancers are often the first example of this disease their local oncologist has ever seen. So, most doctors aren't up-to-date on the latest treatments. e-Patients can learn about the treatments currently in use at the leading treatment centers from their online communities. And they can then pass this information on to their physicians."
- Other headings in this chapter need no comment:
Key Take-Aways (not listed in the paper)
Please think about what it says at the top of the e-patient blog: "Health professionals can't do it alone." Neither can patients, but each can bring a lot to the table. That's why the e-patient team is talking about participatory medicine.
In an environment where something can be created and flourish for free, unconstrained, and where there's a need for it, it's going to evolve rapidly – becoming rich and complex, and what people want.
Footnotes
Week after week on ACOR, I heard of kidney cancer cases where a physician, probably overwhelmed with the explosion of medical information (see #6), were out of date. Informed patients – informed by their peers – made the difference.
