Tuesday, November 20, 2012

We are here for each other...

I wrote about my recent experience with the U.S. healthcare system in a blog post entitled, "Pushing a rock uphill while wearing roller skates." As implied by that title and as partly described in that post, my experience with the U.S. healthcare system continues to be challenging. And pushing a rock uphill while wearing roller skates, for as long as I've been doing so, can take an emotional toll.

Some people in similar situations have been able to find support online. Various communities of support exist online, many bringing together people with the same disease; crohnology.com, which I'll reference again below, is an example. Unfortunately, I've never been able to find that kind of online support. Less specific online communities exist that are of relevance; ButYouDontLookSick.com is an example. But most of what support I've been able to find online has come indirectly via reading the tweets and blogs of others.

Invaluable direct support came in early 2011 when a group dubbed the Friends of Richard Anderson (FORA) was formed. The core FORA and a FORA-initiated fundraiser prompted a flood of badly needed emotional support and a badly needed financial boost. But some of the support was accompanied by disbelief and confusing expectations of how and when I was to express gratitude. Something I needed was still missing.

The closest I came to experiencing what was missing came at Medicine 2.0'11 later in 2011 at Stanford University. I was selected to attend as one of several e-patient scholars. As such, I found myself among others who had had experiences akin to mine, and I began to feel some of the emotional support I had been missing.

Two months ago, Medicine 2.0'11 was followed up by the even more patient-centered Stanford Medicine X conference. And only one week prior was the Partnership with Patients Summit in Kansas City. Scholarships enabled me to attend both (see my nearby official Medicine X e-patient scholar portrait). During both of these events, I was able to hear from and more extensively interact with people who were:
  • true peers -- a community of people who truly understand much of what I've been through;
  • fighters -- people who have been equally unwilling to settle for what the healthcare system had offered to or prescribed for them;
  • teachers -- people wanting to educate others via sharing their stories and advice;
  • change agents -- people committed to preventing others from having terrible medical experiences.
Not all of these people were e-patients; many were medical personnel.

Much has been written about the excellence and the importance of these events. The Partnership with Patients Summit was unique in that it provided coaching to improve the effectiveness of patient advocates, and it began the process of formulating a national patient advocate agenda.

The programs of both Medicine 2.0'11 and Medicine X were inspired and inspirational. Videos of a few of the great presentations of Medicine X are available for viewing online. If you can watch only two, watch Regina Holliday's presentation and the presentation by Britt Johnson (pictured at left).

One of the recurring themes of Medicine X was the importance of the social to achieving the personal. Some examples: Pew Research Center's Susannah Fox referenced the integration of apps and a website with in-person support groups as the secret to the success of Weight Watchers; founder Sean Ahrens argued that the key motivator of crohnology.com use is that users' entries are status updates for all -- that users self-track for others, for sharing; IDEO's Dennis Boyle echoed this, stating that the quantified "us" is more motivating that the quantified "self"; and Ernesto Ramirez, leading facilitator of the Quantified Self movement, argued that the "ourness" of data is what matters most -- that a word better than the word "empower" would be "emp-our-r." At a subsequent "The Future of Health" event in Palo Alto, Keas's Adam Bosworth spoke about the increasing importance of gamification to individuals' achieving healthy behavior, arguing that if you're not a part of a team, you won't sustain in the game. 

Related to this is that at Medicine X, Kasier Permante's Christi Zuber and ExperiaHealth's Kim Petty argued that co-design is as important as the solution to any part of the broken healthcare system. Also at Medicine X, Rock Health's Nate Gross argued that disruption is a team sport. As Regina Holliday stated during her above-referenced presentation, "If everyone plays, everyone wins." A recent tweet by Regina to another patient advocate went deeper:

This is the kind of support I'd been missing. And the boost of energy from the Partnership with Patients Summit and Medicine X came just in time to impact my final preparations for a Pecha Kucha presentation entitled, "A Call to Action Regarding the Patient Experience" which I delivered at EPIC 2012 in October.

Will this feeling of emotional support maintain over time? I hope so. Both the Partnership with Patients Summit and Medicine X now have Facebook pages which should help. Plus I now interact online with attendees of these events more than I did before.

Someone at the Medicine X preconference e-patient dinner noted that more women than men comprised the e-patient contingent. I added that more women than men attended the Partnership with Patients Summit. Women at my table attributed this to women being more social than men about their illnesses, and women being more social about their illnesses with other women than with men. If true, does this limit the support available to a man?

Also consider the following recent words of an "incognito hospital CIO" quoted in the Society for Participatory Medicine's member mailing list:
"My cynicism is predictable, but I’ve always said that these conferences and their self-selecting, charged-up evangelists are buying the illusion that patient empowerment is increasing when it’s really not. Few examples exist where customers have convinced big businesses to change their ways, especially when those changes threaten their profits, and I can’t think of even one where it happened when those customers had little buying power discretion and in fact aren’t even paying with their own money. It’s going to take a lot more than some feel-good conferences attended by the same familiar faces and featuring demos of the latest cool app to change healthcare, if in fact it can be changed at all."
Though he was not referring to the conferences I've referenced in this posting, he would probably include them. 

So, is he right? Have I become a part of a movement that isn't growing and cannot succeed?

A full response would be inconsistent with the purpose of this blog post. However, I will offer a partial response partly and fittingly provided by a presenter at Medicine X. At Medicine X, Dr. Paul Abramson, arguing for a bottom-up approach to fixing the healthcare system, asserted that what is important is to do what is right, and instead of waiting for the world to lead, to let the world catch up. Given how the business environment has been changing in fundamental ways, I feel confident that these ideas and practices developing on "the edge" will increasingly attract "the core."

As for my need for support, I'll continue to look for a disease-specific online support community, and I'll hope that my being male will not interfere with my involvement. However, I already feel a stronger sense of support accrued via my participation in the three events referenced above. Perhaps someday I'll even feel worthy of being a part of Regina Holliday's amazing Walking Gallery (see nearby photo of members of the Walking Gallery in attendance at the Partnership with Patients Summit); the day I sport a jacket with a Regina painting about my story on the back might be the day I'll truly feel that we are here for each other.


  1. It is a movement with a longer history than it's generally given credit for. Many champions have come and gone. Judging from the recent press on your disease, (see Discover magazine via HuffPo http://www.huffingtonpost.com/2012/05/18/brain-tapeworms-cause-neurocysticercosis_n_1527681.html#slide=1110253), perhaps the time has come to start a group for this disease.

    It's also possible that more people should consider hiring patient advocates, with both law and nursing degrees to fight on their behalf.

    A national organization would be great - and could probably get foundation funding.

    The movement will only grow as more boomers approach the time in their life when they need to actually use the medical system - and find it doesn't work the way they think it should.

    The CIO comment above is fair warning. The healthcare system has defeated most of the attempts to reform its basic paradigm. This is especially a problem in the U.S. where "we" made the decision to let private enterprise be healthcare. But any large, entrenched bureaucracy will defend its turf to the death.

    As has often been said about the "healthcare system", it's not about health (true), they don't care (partially true), and it's not a system (true).

    Have you tried using a patient advocate? I'd be interested if they can move some mountains towards getting a proper diagnosis and getting you into the system where you can at least get some treatment and then properly evaluate how the "system" works.

    What would happen if you emailed and called all the people below and let them know a new online patient group might be formed...http://www.niaid.nih.gov/topics/tropicalDiseases/research/default/Pages/members.aspx
    In addition to trying the patient advocate channel, getting professionals in the medical world on your side in numbers is my best guess about how to make progress. The system repels all outside invaders.

  2. And on the topic of Jay Parkinson...yuppie business models for "the worried well" have fueled many enterprises...but talk to the Mayo Clinic, for instance, to see how they have panned out...for most, not well. On the other hand, the economies of scale in a digital world may work out differently.

    Perhaps one could build an ideal system, demo it, and then questions are moot. It's worth thinking about. I made an interactive television channel on health that explored these options back in the mid 1990s for Time Warner Cable, which was tested in their Burbank faciilties with 50 individuals. When the medical director and I interviewed all participants in exit interviews, I later burst into tears - absolutely everyone loved the system in use, and wanted it. All thought it would hugely benefit them. The project was funded in part by health care dollars from NIST, in a program devoted to integrating health IT systems into basic middleware standards that would allow interactive TV, as one of many nodes, to interact with actual providers, telemedicine, and more. So why don't we have this system now? It's a good question.