"e-Patients," Chapter 4: The Surprisingly Complex World of e-Communities

Chapter 3 started with the observation that "the most effective way to improve healthcare is to make it more collaborative," then detailed the many ways this is already happening: Empowered patients, Equipped and Enabled by the Internet, are more Engaged in their care than hardly anyone realizes. (Those are the four "e"s of an e-patient, as defined by DocTom, whom CNN suggested was "the George Washington of patient empowerment.")

The previous post closed with an observation of my own:

This dynamic is already disrupting where value arises in healthcare. Any student of economic earthquakes can see the signs: when a new source arises that...
* adds significant value to an ecosystem
* is free
* and is not subject to the establishment's constraints,
... then the convergence of forces can make for an explosive shift in everyone's value proposition, everywhere else in the ecosystem.

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.

Reading Chapter 4 was, for me, a whirlwind tour of what happens when freely available tools get into the hands of people who are seriously motivated – on their own behalf and then with a commitment to do good for others.

But rereading this chapter now, another story surfaces for me: too often, people think "we are not worthy" compared to doctors, and that's an error. Believe me, I like doctors; they saved me, and I'm not one. But believe this too: it's a complete error not to listen to experienced patients.


4. The Surprisingly Complex World of e-Communities

• 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 is Crazy! 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."
  
  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.
  
  
• Other headings in this chapter need no comment:
  
• e-Groups are always there (24/7/365)
  
• Practical Day-to-Day Illness Management Advice
• Providing continuing support for the incurable
• A godsend for those with limited access to professional care.
  
• Keeping up on the state of the art for your condition

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.

---

As homework for the next chapter (e-Patients as Medical Researchers), please review Steal These Slides.

---