One year ago, I read a JAMA commentary that was so good I had to stand up while I was reading it: Are Patients Knights, Knaves, or Pawns? I blogged about it here (touching off a heated discussion) and started an email correspondence with one of the authors, Sachin Jain.
The result of that correspondence, widened to include William Shrank and Riya Goyal, has just been published in the American Journal of Managed Care, an article entitled, “Bowling Alone, Healing Together: The Role of Social Capital in Delivery Reform.”
The full text of the article is available on the AJMC site, but here are a few excerpts:
…Physicians and the organizations in which they work may want to actively consider how they connect willing patients with one another—as supporters, teachers, and advocates for one another. Patient-centered medical homes may include patients and family members as integral members of care teams. The medical practice could become both a center for individualized care and a source for disease group management.
…Online communities focused on specific conditions have been shown to offer rich, supportive environments where patients and their caregivers share personal stories, provide emotional support, and offer advice about up-to-date clinical care. In new care delivery models that integrate online communications into their work flow, clinicians may engage patients with common conditions within their practice to help manage one another’s conditions. Moreover, they may use linkages to other practices and clinicians to seek help for patients with more rare conditions. In these ways, the clinical practice might expand its walls to be available to help patients find support at any time of the day.
…As the burden of chronic disease grows and our resources to manage healthcare problems diminish, healthcare providers, health systems, and commercial and government payers would be wise to consider the role of creating greater social capital as a means of improving the quality and efficiency of healthcare. Perhaps a variety of metaphorical “patient bowling leagues” will have their place in the healthcare delivery system of the future.
One of my contributions to the article was the citation of some very promising quality improvement work among pediatric gastroenterologists. If you’re not yet familiar with it, please see: “ImproveCareNow: The development of a pediatric inflammatory bowel disease improvement network” (Crandall, et al. Inflammatory Bowel Diseases. Volume 17, Issue 1, pages 450–457, January 2011.) The really exciting piece for me is that ImproveCareNow is now adding online patient networks to their toolbox, as part of the Collaborative Chronic Care Network or C3N Project.
I also riffed off these themes at last year’s Medicine 2.0 conference. Here are a couple relevant excerpts from that speech — a short video clip and then some text:
Pew Internet’s research has found that Facebook seems to support intimacy and relationships among groups of people, rather than undermining those positive aspects of life. This is no surprise to many people, especially those under the age of 35, but it’s a big surprise to people who have not had the benefit of these kinds of experiences. I think that’s a significant barrier to adoption of social networks in health care, so let’s spend a moment understanding their point of view.
Robert Putnam’s 1995 book, “Bowling Alone,” struck fear into many people’s hearts because of his stark image of one man pursuing what used to be a social hobby – bowling – now pursuing it alone.
Putnam argued that American society was fragmenting – people had become less likely to join community groups and more likely to spend time alone, or with fewer people, and this was chipping away at our collective social capital.
This observation has permeated social theory discussions ever since. But that 1995 image of a solitary bowler needs an update. Now, in 2011, people are reconnecting with community groups, reconnecting with each other — online.
We are all connected. We are all building social capital. You just can’t see it if you’re not looking. And many people in our health care systems are not looking.
Here’s to inspiring a few people to start looking. That’s why I wanted to work on an academic journal publication and that’s why I will continue to blog, speak, and publish research — to shine a light on the social impact of the internet.
Thank you Susannah. You and I see the world in much the same way!
Of the various paths proposed to improve the ailing the healthcare system, the only one that I believe has legs is to build collaborative models of information flow, learning, and healthcare improvement.
As I have previously written:
“My premise is simple: Patients need other patients for support. Physicians need other physicians. Scientists need other scientists. And only when we have built systems to support sharing across these networks and we have adopted new skills to leverage collaborative models will we see real, meaningful improvement.
This is not a story about technology, though technology plays an important role. This is a story about the way information flows, the forces that restrict information flow (either intentionally or unintentionally), the systems that can be built to optimize information flow, and the skills we would all need in order to make use of this new data stream.”
The challenge that we must embrace is that the systems that support the collaboration models in healthcare (what I have come to call ‘SocialQI’) are still in their earliest renderings – and we need to accelerate the transformation of these systems to support sharing. But even more pressing, we need to begin to craft a plan for supporting the end-users of these social systems lest they find themselves confronting the same barriers over and over again.
So my personal goals are two-fold: 1) to bring together the architects and engineers of these models in much the same way this blog brings together the patients and passionate caregivers such that they can share and learn from one another; and 2) to help the ‘end-users’ realize that, though they may not be naturally equipped with the skills to leverage these new relationships and expectations(these are not natural skills), they can effectively develop these skills.
Only by driving better systems and ensuring patients, physicians, and scientists can use these system will we can get to the point where no one feels as if they are bowling alone.
Well said, Brian! Thanks so much.
Whoa, speaking of bowling (and health):
The Most Amazing Bowling Story Ever
It’s long, but stick with it and you’ll see why it’s connected to this conversation.
Question for you, though. Rather than being knights, knaves or pawns, aren’t patients really kings? When check-mated, the game’s over. The king is what the game is all about, after all.
BOY do I have a snootful of questions about this. Fascinating. I read the paper – kudos!
>>> A study in the Boston VA hospital (~10 years ago??) said more socially connected surgery patients needed less pain med and were able to go home sooner. Sure would like to see that replicated, measuring online connectedness!
We could measure
–condition-specific patient-peer communities
–“this-episode-specific” social support (CarePages, CaringBridge, CareFlash)
–general online connectedness (e.g. Facebook friends).
I can say first-hand that when I wondered whether it was time for my life to end, it made an IMMENSE difference that day after day a growing number of people were “cheering” for me.
That rang in my ears when I read the “best bowling story ever” post you linked to. (Others who haven’t read it, you should. This effect is REAL, somehow, to some extent, and as we move forward with accountable care and patient-centered outcomes, we need evidence to help put a value on including such things!)
>>> To better understand and characterize the value introduced through communities like ImproveCareNow, ACOR, PatientsLikeMe, RAWarrior: I’d love to start accumulating a diary of concrete examples of value that was received via the network, tagging each with its nature (pertinent medical facts, cheerleading, dealing with side effects, etc) and its source (e.g. peer, clinician, blogs, news media??) From this we could develop a taxonomy and a model of types of value and the channels through which the value flows from point of origination to the people who need it.
I know that’s a lot broader than BNA (Bowling Not Alone); I’m now talking about a context in which BNA / Healing Together can be understood, valued, and perhaps even prescribed.
>>> I imagine someday a (probably complex) value equation, general enough that it could explain and then predict how things change as the environment shifts. For instance, it would help understand the interplay between what Doc Tom called the “lethal lag time” and the way a smart patient community goes out and finds such info before the old-school channels (publication delay etc) connect the valued item with the people who need it. What are the parameters, the coefficients in the value equation, that flipped when the internet came along?? Whatever they are, they made the impact of such info flip from 0 (lost opportunity) to 1 (potential did materialize).
>>> And to return to the subject at hand, healing together: we need to model and measure how connectedness improves outcomes. AHRQ has a nascent project to help providers integrate behavioral/mental health into primary care; its interests are much aligned with this issue.
Enough. Back to vacation!