"e-Patients," Chapter 3: Patient-Centered Networks: Connected Communities of Care

Chapter 2 ended with two pivotal observations: "Clinicians can no longer go it alone," and "The most effective way to improve healthcare is to make it more collaborative... In the chapters that follow, we offer more suggestions on how we might accomplish this." Chapter 3 begins this inquiry by exploring the trend that made the most difference to me, personally. The chapter starts by exploring the different purposes that have evolved for patient-centered communities.


3. Patient-Centered Networks: Connected Communities of Care

It's astounding how widespread e-patient behavior is, considering that hardly anyone I talk to even knows it's happening.

• Internet surrogates (peer caregivers (especially women) researching for another)
• "In the beginning, like most health professionals and researchers, my Pew colleagues and I assumed that patients would do their searching for themselves. So we were surprised to discover that more e-patients (81%) had gone online because a friend or family member had been diagnosed with a new illness than had searched the Net following a new diagnosis of their own (58%)."
• Pew research in 2006 found 93 million Americans seeking health information for themselves, another 42 million seeking information for their parents, and more.
  

• Helping patients & families deal with a new diagnosis: when people hear of a friend's crisis, they reach out with advice and useful information.
  
  
• Patient-centered support networks - a very different entity than the better-known disease-specific communities.
• I'm not in the book, but my CaringBridge friends are a perfect example. They'd get email notifications of each new post I made, and sometimes they'd forward the emails to others. In Web 2.0 terms, my support "went viral," and I got advice and support from people I'd never met or hadn't seen in decades.
  
  
• Web sites that support patient-centered online health networks: The public is now more aware of CarePages and CaringBridge, even moreso since this June's Associated Press story. But it was a very new topic in 2006.
  
  
• Why personal online health networks have received so little attention: Most people have considered the discussions very private. Not me, baby: put me out there. :)
  
  
• Providing continuing support for the incurable: "Professional medicine is often at its worst in providing continuing comfort and care for patients facing serious illnesses that are beyond the hope of cure. In such cases, the support and care patient-centered networks of family and friends provide can be a lifeline."
  
  
• What we can learn from patient-centered networks:
  
  
• "Patient networks are emerging as a new medical domain within which a wide variety of individuals and groups become valuable healthcare resources. Nearly all of those involved with patient-centered networks provide their services for free, and since patient-centered networks operate independently of the formal healthcare system, they are not constrained by that system's built-in limitations, inefficiencies, and defects." (emphasis added)
  
  
• "The importance of this form of communication should not be overlooked, since individual telephone calls and emails to a person's entire network of concerned individuals puts a huge burden on the patient or the caregiver."

The following is my observation, not taken from the published paper:

Look at how this dynamic is already disrupting where value arises in healthcare. (See the italics I added above.) 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,

...the convergence of forces can make for an explosive shift in everyone else's value proposition, everywhere else in the ecosystem. The White Paper doesn't say so, but having been through the gauntlet myself, and being a student of business change, the signs are clear enough for me.


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Next: The surprisingly complex world of e-communities. (That illustrates what I just said: 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.)