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.