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Contents |
Chapter 3
Patient-Centered Networks: Connected Communities of Care
Topics Covered
This chapter is 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. It also reminds all of us that too often people think "we are not worthy" compared to doctors, and that's an error. The members of the e-patients scholars group like doctors; in fact many of them are! But they strongly believe this too: it's a complete error not to listen or to be dismissive of experienced patients.
e-patient Dave: "It's astounding how widespread e-patient behavior is, considering that hardly anyone I talk to even knows it's happening."
Sections
- 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 with a new diagnosis: When people hear of a friend's crisis, they reach out with advice and useful information.
- Patient Centered Support Networks in Serious Illness - a very different entity than the better-known disease-specific communities. e-Patient Dave is not in the book, but his CaringBridge friends are a perfect example. They'd get email notifications of each new post he has made, and sometimes they'd forward the emails to others. In Web 2.0 terms, his support "went viral," and he got advice and support from people he'd never met or hadn't seen in decades.
- Websites Supporting Single Patient Online Support 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 have these Personal Networks received so little coverage? Most people have considered the discussions very private. But entire communities of parents with seriously sick children have embraced these services as essential tools of care.
- Providing 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 these Individual Patient-Centered Social 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."
Key Take-Aways (not listed in the paper)
Footnotes
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.
