Project redefines the doctor-patient relationship 

Patients with chronic illnesses spend more time maneuvering through the healthcare system, more time concerned about symptoms, more time thinking about their medications and worrying about their health. But for all that time and energy, they don’t fare as well as they could. 

“We know from the literature that doctors deliver about half of indicated care and patients do about half of what they should to stay healthy,” says Michael Seid, PhD. 

And neither doctor nor patient is happy about it. 

“No doctor gets up in the morning and says, ‘I’m only going to give my patients half of what they need.’ And patients want to be healthy.”

So Seid, a psychologist at Cincinnati Children’s who studies behavioral and social science in medical settings, teamed up with Peter Margolis, MD, PhD, a pediatrician and epidemiologist in the James Anderson Center for Health Systems Excellence, to do something about it.

Four years ago, they were awarded a “Transformative R01” grant from the National Institutes of Health that set them on a course to transform the way patients with chronic illness receive care.

The project was one of just 42 projects nationwide selected to receive such a grant, chosen specifically because it challenged the traditional top-down approach to care delivery.

“Chronic illness kills too many and costs too much,” Margolis and Seid stated in the grant application. “What if there was a way to create a vastly better chronic illness care system by harnessing the inherent motivation and collective intelligence of patients and clinicians?”

Margolis and Seid used the grant funding to launch the Collaborative Chronic Care Network (C3N) Project to create that better system. Inspired by collaborative social platforms like Wikipedia, the researchers wanted their new model to blend the best ideas of patients and caregivers with technology that was truly useful.

Creating the mode

They chose to develop the prototype for this new model of care with an established chronic care network, Improve Care Now (ICN). The network includes more than 50 gastroenterology sites around the country that care for kids with inflammatory bowel disease (IBD) - Crohn’s disease and ulcerative colitis. The network had already improved the remission rate for their patients by 20 percentage points, just by sharing data and best practices.

“We knew that clinicians could collaborate and do better. And patients were finding each other on the Internet,” Seid says. “But there wasn’t any space where clinicians, patients and researchers could get together on the same platform.

From mere data to useful information

One of the most daunting challenges faced by the project was creating a shared database of patient information. The data had to be secure enough to protect patient privacy but accessible enough that clinicians and patients could use the information in new and helpful ways.

With a $12 million, three-year grant from the Agency for Healthcare Research and Quality (AHRQ), experts in the Division of Biomedical Informatics at Cincinnati Children’s created an “enhanced registry” for the project. The registry allows clinicians at each participating site to enter patient data into the electronic health record just once. The patient’s complete identified information is stored at the site, while a de-identified copy of the data is automatically sent to the C3N database for use by participants. 

No more passive patients

Re-imagining the traditional model of care in which patients passively receive care from a doctor was another challenge taken on by the C3N team – a challenge that demanded the involvement of patients and parents. 

“With a chronic condition, most care takes place outside the clinic, by the patients or parents themselves,” Seid says. “A better way to think about healthcare is shared work. It takes everybody to create health.”

They invited patients to create a Patient Advisory Council, which now consists of more than 30 teens and young adults with IBD. PAC members participate in design meetings and on research teams, create webinars and write for the blog.   

Alex Jofriet is one of those kids. Diagnosed with Crohn’s disease at age 9, he has struggled with medications, with surgeries, and with accepting the fact that his illness made him different. Getting involved with the ICN network and the C3N project – including writing for its blog – changed his perspective about living with a chronic condition.

“Opening up and focusing on advocacy brought me a new love for life, and made me a stronger person, healthier and less stressed,” he says. “I like to think that I provide inspiration and hope to others.”

Now 17 and a high school junior, Alex has not only accepted his condition but credits it with helping him become stronger and more resilient. It has also helped him decide to become a gastroenterologist. As he wrote in a blog post, “Life will always be full of obstacles but the way you deal with them is what determines whether the roadblock will be turned to a strength or a weakness.”

A Parent Working Group is also part of the C3N Project. These parents share their experiences and ideas with clinicians and some serve on the ICN board of directors and its research committee. They help write grants, make welcome packets for newly diagnosed patients and talk with families who want to hear from someone who’s “been there.” This summer, parents helped launch an awareness campaign for the network.

Seid and Margolis hope that the success of the C3N Project’s work with the Improve Care Now network will serve as a prototype for other chronic illnesses. At a time when caregivers are pushed to the limit and patients demand a more active voice in their care, the approach is a big win for both sides.

“Clinicians are already working as hard as they can, and patients and parents are the most under-utilized workforce in healthcare. Many want to do more,” Seid says. “The idea is to shift to a collaboration where everyone works together. We want patients to feel healed, and we want doctors to feel healed too, because the system isn’t working for them either.”