‘Follow your heart and you can’t go wrong’

It’s not every day a group of doctors sits quietly in a room and listens to patients, parents and peers tell them what they think is wrong about the way the care is provided.

The author, Peter Margolis

But that’s how a group of doctors that met at Cincinnati Children’s sat during a kickoff design meeting last month. They did it so they could learn with the hopes of building a better mousetrap — or model to provide chronic care.

The work of the collaborative chronic care network (C3N) is just getting underway and the parties involved hope that by building a system that provides for widespread sharing of information and innovation among doctors, patients, hospitals and clinics we can improve care. It’s proven successful already in Improve Care Now.

As part of the kickoff design meeting, a panel of patients and parents sat before a room filled with MDs, PhDs, computer engineers and other parties who will help build this network. The panel — representing people with Crohn’s disease and/or ulcerative colitis, was not shy.

“I wish the doctors better understood what they are asking the patients to do.”

“I want you to know the whole patient … what’s going on in their lives over time, not just that snapshot of 20 minutes every other month.”

“Visiting with doctors can be very intimidating. Sitting in this room right now is very intimidating.”

“I wish I had more time to ask questions.”

The patients and parents relish the opportunity to connect with other people going through the same illness in the same way.

“The disease can be very isolating.”

“The expertise is very limited in certain parts of the country.”

“The disease is different for every person. To find someone who is on the same page as you is exciting.”

The goal of the network — being built in partnership with Lybba and building on the success of Improve Care Now — is to reduce the time it takes to improve care. With the free exchange of information and patient experiences, the caregivers can try new things, watch and report progress and make adjustments.

Jesse Dylan, an acclaimed filmmaker who formed Lybba to join people together, was on hand in Cincinnati for the design meeting. He said by combining scientific/medical information with the anecdotal, the power of innovation and better care will emerge. “There needs to be a balance, but we can do it,” he said, stressing that compassion must go hand-in-hand with any system.

A lot of challenges were discussed during the two-day meeting. Perhaps there were more questions than there were solutions. But the parties did not disband discouraged. They were emboldened by the challenge and the promise. And many remembered the words of a 22-year-old patient on the panel.

“The kids need to be shown love and that they are cared for,” he said. “If you follow your heart and do what’s best of the kids, you can’t go wrong.”

It’s what keeps us going.

Peter Margolis, MD, PhD, is a Professor of Pediatrics and Co-Director of the Center for Health Care Quality. He works with practices and health care organizations to assist them in designing better systems of care for children. Dr. Margolis is currently leading center projects in support of the American Board of Pediatrics and the American Board of Medical Specialties.

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