The Collaborative Chronic Care Network is a 5-year project funded by a high-risk, high-reward grant from the National Institutes of Health. It is a model of collaboration, centered around an Internet platform, that seeks to rewrite the medical script and make chronically ill patients more able to engage in their own care.
One of the missions of Medicine X is to shine a light on innovative people and projects using emerging technologies in health care. Here, we share our insights into this exciting project.
Emily Blosser was three days shy of her 10th birthday when she was diagnosed with a severe form of the autoimmune disorder Crohn’s disease. Confronting fatigue and persistent, painful diarrhea, she struggled over the next year to keep up with the rhythms of pre-adolescent life. She missed around 20 days of school; she dropped out of ballet, piano and girl scouts; she stopped playing with friends.
In short, she and her family felt powerless and isolated, overwhelmed by conflicting information and cut off from their native community—healthy people.
“Our life was pretty much stopped around trying to make things better for Emily,” her mom Beverly remembers.
What Beverly didn’t know at that point, though, would come to have a profound impact on her family’s quality of life: Fifty miles down the road, two professors at the Cincinnati Children’s Hospital Medical Center were busy thinking about her daughter—not in name, of course, but in concept.
An “Upside-down” System
Flash back to 2008. Peter Margolis and Michael Seid, inspired by the Human Genome Project, Google, Creative Commons and Linux, find themselves obsessing over distributed production systems. Seid, a psychologist, has been caught up in papers addressing the link between social networks and health behaviors; Margolis, a pediatrician and epidemiologist, has been tracking examples of practice-based collaboration among physicians. Why, he wonders, aren’t they seeing more participation?
Both lines of thought circle around a central concern: Our entire system of research and care around chronic disease is stuck in the upside-down position. Knowledge and innovation is expected to spring up at the top of a rigid hierarchy, with highly specialized academics and practitioners, and eventually trickle down to patients. Wouldn’t it make more sense for knowledge to bubble up from the real experts—patients like Emily Blosser and her mother?
In discussions with the film director Jesse Dylan, Seid and Margolis find simpler words for the problem they perceive: Doctors and patients have been following a flawed social script.
“The narrative patients have—especially with inflammatory bowel disease—is: I’m sick; I’m broken; I’m alone,” Seid says.
Where is the sense of community and collaboration in this narrative?
“At base,” Seid says, “this is all about changing the story about what it means to be sick, to have a chronic condition—what it means to be a patient, what it means to be a clinician, what it means for patients and clinicians to interact.”
Upon this subversive foundation, Seid and Margolis imagine an entirely new system of care, which they sketch out in an 8-page proposal. As “outrageous” as they consider their bid to be, it succeeds; they secure a high-risk, high-reward TR01 grant worth an initial $8 million.
The N-of-1 Trial
After an intense design phase that consumed C3N’s first year of funding, Seid and Margolis began building prototype interventions and recruiting clinicians and patients.
Among those were Beverly Blosser and her daughter, Emily, who soon became the subject of an N-of-1 trial. Mother and daughter, along with a clinician and researcher, now function as a tiny investigation unit within a larger, interconnected system. The doctor guides disease management strategies; Emily and her mom complete weekly online surveys about pain and fatigue levels; and a researcher analyzes that data in the context of the larger network of trials.
C3N is currently in its third year, and the team is only now finishing detailed design on its Internet platform. But once this has been built and the project taken to scale, Seid and Margolis envision Emily’s data set combining with millions of others to compose a massive, open-source body of information from which knowledge can be distilled.
If the grand vision is slow-moving, Emily’s story has already been rewritten: She’s not only a patient but a participant in her own health.
She’s talking about starting up her piano lessons again; she’s playing basketball and acting in school productions; she’s on her school’s student council. And while she and her mom have re-entered their old community, the two have gained a new one: the world of other families affected by Crohn’s.
Life, Beverly says, isn’t just back to normal. It’s back to “wonderful.”