Are we betting on a "me" in medicine?

Whether we discuss EMRs, online communities, Social Media, or Participatory Medicine, we are betting on the existence of a highly evolved "Me" to emerge in our medicine of the future.

This is the kind of Me that has been educated into prevention, maintenance, and balanced self care. This is the kind of Optimized Me that feels a strong sense of "agency" in the face of uncertainty; which is articulate and full of faith that less anxiety/more comfort is a birthright, even in the face of terrifying, chaotic, and painful illness experiences.

And that's not even mentioning those "ambiguous losses" -- caregiving, grief, aging, and life adjustments -- that impact significantly one's health.

I worry that betting on the existence of an Optimized Me, and building apps around that assumption is not a good bet. It flies in the face of what we know about human behavior. ...

So, as we mull through our notes from #Health2con (follow the stream on Twitter) ... my question to my tribe is: Where do we predict people will be picking up the desired highly evolved sense of self that can optimize the me in medicine? Within the family? The community? School? Is it online? Offline? Or, still TBD? Key question and one that is extraordinarily difficult to answer.

I have a bias. My bias is that some in our population are more uniquely qualified to become authorities on illness. Period. It's ORGANIC. These folks possess the temperament, the abilities, the sensory integration for leadership within the space and we ought to harvest them. Simply put, they are uniquely endowed to hold the mic for us.

These folks usually earn credibility from within, yet they also bring credibility from without to the development of their narratives. This is a very important point as they are "of two worlds."

In the Health 2.0 space, the likely crossovers are survivors who are also writers, technologists, advocates, wonks, or entrepreneurs. They are men, women, old and younger, 1st hand survivors or loved ones of the deceased. They walk significantly different pathways and speak many different languages. Yet, they possess one thing in common: their "Me" is highly evolved, reduced and polished up for the tools and techniques to circumscribe the limits of linear healing.

There are hundreds of these such healing intermediaries, who broker (and transmit) complex narratives in a variety of ways: narrow cast 1:1, broadcast 1:many; real time, on demand, visually, with sound or plain old writing.

While Web and mobile apps proliferate new "stages" for health stories - some that even beat time and geography barriers - the structure of the healing show follows the crowd pleasing, mythic format:

  • I was there
  • It was frightening
  • This is what it felt like
  • Here's how I managed
  • Take good care
  • This is what I learned
  • Try to do this, avoid doing that
  • Keep in touch
These stories become more riveting and powerful the closer you are to the illness/disease experience. So, the better we become at matching storyteller with audience, the greater the therapeutic value of the SM and Web 2.0 show. Therapy = credibility (earned) + context (delivered or found).

In closing, it takes an exceptionally primed and developmentally advanced "Me" to offer healing to others. There are strong regional as well as cultural issues at work in the creation of credibility within a healing context. Innovation in the Health 2.0 space that fails to account for tribal credibility and preferences for authority will simply not succeed, regardless of platform and marketing dollars backing it.

Several rich and authoritative health testimonial brands with their affiliation:

David deBronkart - kidney cancer, influencing the development of electronic medical records

Regina Holliday - Medical advocate and muralist
Gilles Fryman - E-Patient and Founder of ACOR
Jen McCabe Gorman - Trauma, mental health
Therese Borchard - Living with Bipolar, depression
Hester Hill Schnipper - Coping with breast cancer
Trisha Torrey - Patient safety and preparedness advocacy
Patients Like Me
- ALS community

Ted Eytan, MD - Kaiser and Clinnovations
Danny Sands, MD - Cisco and Beth Israel

Add links to expert/survivors/advocates below

For more check out: e-Patients.net

This post's word cloud ...


  1. Christine: right on sister! I share your sober assessment of the viability of a "me" with the capacity to engage the healthcare borg from a purposeful and enlightened path. Tho I do hold out aggregate promise that we will source the needed wisdom over time but only organically and context specific.

    I like the "sage" piece too. Both from a credibility and tribal notion.

    Great write-up!

  2. Very interesting. The 'healing intermediary' seems so elusive to me. Few seem willing to identify who would fill such a role.

  3. For the record, fox42 is @doctor_v Don't ask