Over on the Medicine X blog, Julia James has written a great piece on the Collaborative Chronic Care Network (C3N), a five-year project aimed at developing systems that enable patients diagnosed with chronic illnesses to be more engaged in their own health care.
In the post, James tells the story of how the lives of nine-year-old Emily Blosser and her family were turned upside down after she was diagnosed with a severe form of the autoimmune disorder Crohn's disease. Similar to many patients and caregivers, the Blossers were overwhelmed by the task of managing Emily's condition and soon felt powerless and isolated from their community of friends and family.
But little did the family know that Peter Margolis, MD, PhD, and Michael Seid, PhD, professors at the Cincinnati Children's Hospital Medical Center, were already working on a solution for their problem. Funded by a high-risk, high-reward TR01 grant from the National Institutes of Health, Margolis and Seid launched C3N and began building prototype interventions and recruiting clinicians and patients. James writes:
[Emily Blosser and her mother] 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.
The full post offers additional details about this exciting project and is worth taking a moment to read.
Previously: How Regina Holliday uses art to advance the discussion about patients rights, Founder of Diabetes Mine discusses the power of patient communities, ePatient discusses how web-savvy patients are changing the practice of medicine and Stanford Medicine X advisory board announced