Working Together to Improve Outcomes

Just 10 years ago, Cole Jackson had a big secret, one that forever changed his life. The summer before his freshman year of high school, Cole gave up one of his favorite things – playing baseball. He withdrew from his friends; he became a different person.

Cole was diagnosed with Crohn’s disease, a form of inflammatory bowel disease (IBD). As a young adolescent, he was scared, embarrassed and felt he had nowhere to turn. “I told one person in high school,” Cole recalls.

Now 23 and working at Cincinnati Children’s, Cole talks openly about his disease. Cole is part of the IBD learning network at Cincinnati Children’s, which is helping improve care for patients with Crohn’s, colitis and other inflammatory bowel diseases here in Greater Cincinnati and beyond.

The Benefits of Collaboration

Cole, who studied health communications at Ohio University, is now a program coordinator in the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s. The center, established in 2010 and named for former president and CEO Jim Anderson, is the first of its kind in the nation. Its work focuses on improving child and adolescent health by challenging conventional thinking and igniting innovation and change in the delivery of health care.

“The Anderson Center marshals the unique talents and capabilities of Cincinnati Children’s to address problems in the delivery of optimal care,” explains Uma Kotagal, MD, senior vice president of Quality and Transformation at Cincinnati Children’s and director of the Anderson Center. “We are helping to implement changes on the frontlines today, while collaborating with other leaders to make the health care system the best it can be in the future.”

Cole and many of the staff who work in the Anderson Center have a level of dissatisfaction with the current health care system and are driven to help make things better.

The learning network Cole works with in the Anderson Center brings together IBD clinics throughout the world through online networks to share best practices and patient outcomes. Members can see what others are doing and how care is improving, allowing them to learn faster and adapt treatments quicker to improve health. In a 27-month period, the network of 30 clinics with approximately 270 physicians and 10,000 patients has seen a 20 percent increase in patients in remission. The improved outcomes are attributed to the knowledge shared between the providers of care in the IBD clinics.

It is estimated that about one million people in the United States have Crohn’s disease and ulcerative colitis. Of the patient population, an estimated 10 percent, or 100,000, are children under the age of 18. Translating the success of the IBD learning network to the entire US pediatric population with this disease means 10,000 more children could become symptom free.

This work is already making an impact in the IBD clinic at Cincinnati Children’s, according to Lee Denson, MD, medical director of the Inflammatory Bowel Disease Center at Cincinnati Children’s.

“Participating in the IBD learning network has helped us to optimize the use of current therapies across our large practice,” Dr. Denson says. “Since adopting the practices developed by the learning network, we have observed substantial improvements in patient outcomes, including remission of disease activity, improved quality of life, and increased confidence in managing the disease. Over the next few years we look forward to continuing to improve the self-management skills of our patients as they transition to adulthood.”

Testing New Ideas to Transform Care

George Dellal is the program manager for the Collaborative Chronic Care Network (C3N), which supports the IBD learning network by developing new ideas to help doctors and patients. The C3N is comprised of dedicated workers with clinical and non-clinical backgrounds at Cincinnati Children’s, who are creating and testing a variety of new strategies to improve care for children and adolescents with IBD. More than a dozen projects – known as prototypes – are in development and testing phases. These projects focus on capturing meaningful patient data, treating symptoms and openly sharing knowledge.

“Our goal right now is to bridge the gap between patients and doctors,” George says. “You may have a patient that comes to the doctor every six months, and they can tell you how they are feeling that day, but what about before then? What if that patient was able to bring in a graph of how they felt for the past months? We are developing a way, through the use of smart phones and the internet, for patients to easily collect data that is meaningful to their doctors.”

This type of tracking merges the electronic health records that are maintained by health care facilities with personal health records kept by patients – giving care providers a bigger picture of problems and patient concerns. Now multiply this information by the 30 participating sites throughout the world, and all the patients seen at each site, and you get a great database of information that enables doctors everywhere to better treat their patients.

Helping Patients Help Themselves

Cole remembers the exact moment he came to terms with his disease. He was a sophomore in college and had a Crohn’s flare up. Unable to take the pressure of his disease alone, he talked to a chaplain at Cincinnati Children’s when he was visiting for a surgery to help with his condition.

“That was the moment when I finally let it all out,” he says. “When I was diagnosed in high school, I had a lot of other things going on in my life. My parents were getting a divorce that summer and there was so much else going on that I chose to bottle my feelings towards my disease and other events taking place in my life.”

Cole is helping develop a mentoring prototype for C3N to help adolescents get through the pain and uncertainty of their diagnosis by utilizing peer-to-peer dialogue. It is one of many new ideas being tested that focus on better supporting patients. Cole hopes to demonstrate that by reaching out to newly diagnosed patients who choose to be a part of the program, he can empower them to help improve outcomes for themselves and others.

“If they feel less alone and can cope better with their diagnosis, they may be more vigilant in tracking their symptoms and working with their doctors to improve care,” Cole says.

The mentoring prototype will start trials at Cincinnati Children’s and other sites throughout the country this year, along with a web-based community networking prototype and several other tools aimed to help patients and doctors. Once the trial phase is complete, it will be evaluated and, if successful, refined to improve care in more clinics.

Improve Local, Change Global

In keeping with the Anderson Center’s mission to be a catalyst for improving outcomes and transforming health systems across the world, all that is learned through the C3N is made available to any other IBD clinics interested in its findings. The successes of the effort will also be used to improve care for patients with other chronic diseases, like juvenile arthritis, congenital heart disease and childhood obesity.

“The beauty of this is that we can pick up what we’ve learned about IBD care and apply it to another chronic disease,” George says. “The tests we are doing on the prototypes now will carry over to other diseases and improve the outcomes for patients around the world.”

The James M. Anderson Center for Health Systems Excellence at Cincinnati Children's

Fully aligned with Cincinnati Children’s vision to be the leader in improving child health, the Anderson Center aims to transform health care delivery systems by sparking the creation of new knowledge and helping to quickly translate what is learned into new improvements in care.

“It is the application of new knowledge, in the form of new treatments and care innovations, that is generally the missing piece of this type of work,” explains Uma Kotagal, MD, senior vice president of Quality and Transformation and director of the Anderson Center. “We are not just imagining the future of health care,” she continues. “We are encouraging change and putting research findings into action.”

Key focus areas for the Anderson Center include:

  • Safety: creating new partnerships with national and international leaders in safety to advocate for change in environmental factors that affect safety.
  • Capacity: working to expand inpatient and outpatient services without substantially increasing physical space.
  • Chronic and Complex Conditions: dramatically improving outcomes and quality of life for children with chronic and complex conditions.
  • Community and Population Health: addressing areas of need in our community to help Greater Cincinnati become the healthiest region for children.
  • Leadership Academy: training the next generation of leaders in health care in the science of improvement.

Community Advocacy

Terry and Christy Horan.Early supporters of the Anderson Center, Terry and Christy Horan are looking forward to the improvements in health care it will generate locally and globally.

“We like that we can serve as a catalyst to help health care organizations use research to improve delivery of care,” says Terry, who is president and CEO of a health and wealth management company in Cincinnati. He notes that the research conducted in Cincinnati will impact his field by providing information and access to better outcomes to all health care providers, not just Cincinnati Children’s.

The Horans’ excitement is tangible. They have already contributed financially to the Anderson Center and agreed to be advocates within the community.

“Cincinnati Children’s is going to be leading the nation in these health care improvement efforts,” Christy says. “Cincinnati loves to get behind a winner, and the Anderson Center is truly something our town can be proud of.”

If you would like to learn more about the work of the Anderson Center, contact: Sarah Sullivan at 513-636-5664 or sarah.sullivan@cchmc.org.

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