Jennie David was diagnosed with Crohn’s disease, just after her 12th birthday. None of the usual treatments worked for her. By the time she was 19, her condition was so severe that doctors said her entire large intestine needed to be removed.
Her surgeon assumed that a young woman would not want an ostomy, in which an abdominal opening is created that allows feces to empty into an external bag. Instead, he offered her an internal procedure that allows people to use the toilet normally but more frequently than before, and it sometimes can lead to permanent diarrhea and incontinence.
But David, who had researched the options on her own, asked for an ostomy. “I knew people with bags who wore bathing suits and had boyfriends. I wanted to go back to school, and I needed bowel control,” she recalls.
At that time, David says, clinicians generally weren’t asking patients lifestyle questions. Now 23 and a graduate student studying clinical psychology, David is raising those questions and contributing her perspective as co-chair of the 17-member Patient Advisory Council for ImproveCareNow (ICN).
ICN is a network of more than 70 pediatric gastroenterology care centers in the United States and United Kingdom that together care for over 20,000 children and youth with Crohn’s disease and ulcerative colitis, which are together referred to as inflammatory bowel disease (IBD).
Currently ICN serves about 45 percent of all US children with IBD cared for by pediatric gastroenterologists. ICN also engages patients, families, and clinicians in research to learn what treatments are most effective, given a patient’s condition and preferences.
July 2017—In an essay published in the New England Journal of Medicine, Jennie David tells the story of how she, as both a patient and a researcher, became aware of the little things patients like herself need to feel compassion, dignity, and support. We interviewed David in 2015 as a patient partner for ImproveCareNow, one of PCORnet’s Patient-Powered Research Networks, for this Research in Action feature.
Data for Decision Making
“Patients want answers. What we’re trying to do is create a system where patients and clinicians are part of all phases of the research, including deciding what to study,” says ICN co-investigator Michael Seid, PhD, a social and behavioral researcher at Cincinnati Children’s Hospital Medical Center, and the father and brother of Crohn’s disease patients.
ICN is among the 29 PCORI-funded health networks in PCORnet, the National Patient-Centered Clinical Research Network.
With PCORnet, PCORI is building infrastructure to use real-world clinical data in comparative clinical effectiveness research (CER) to answer questions important to patients and those who care for them.
Key PCORnet requirements are that studies center on topics and outcomes important to patients and that patients, families, clinicians, and researchers collaborate in the governance of the component networks and PCORnet itself, as well as in all phases of the research.
Two types of networks are participating in PCORnet. Clinical Data Research Networks (CDRNs) originate in healthcare systems, and Patient-Powered Research Networks (PPRNs), such as ICN, are operated by patients focused on a particular condition and interested in sharing health information and participating in research. In a PPRN, such as ICN, patients partner with academic researchers in the network’s governance. The PPRNs share expertise, tools, and resources, with each serving its own community but also working together. PPRNs will soon begin carrying out collaborative CER projects.
Originally a physician-led quality improvement collaborative, ICN partnered with the National Institutes of Health (NIH)-funded Collaborative Chronic Care Network (C3N) Project to become the first C3N—a learning system in which everyone can be involved in improving health and health care. The C3N Project aims to transform care of chronic health conditions by helping multisite improvement networks, such as ICN, transform themselves into C3Ns. Since its inception, ICN has increased the proportion of its patients in remission from 55 percent to 78 percent, primarily through greater standardization of procedures to make care more proactive and reliable, says Richard B. Colletti, MD, President and Executive Network Director of ICN and Professor of Pediatrics at the University of Vermont College of Medicine.
“The PCORI funding is really enabling us to develop and start to scale up our ideas about how to strengthen the clinical research infrastructure of the network and to more fully engage families,” says ICN Scientific Director Peter Margolis, MD, PhD, who is Director of Research at the James M. Anderson Center at Cincinnati Children’s and Professor of Pediatrics at the University of Cincinnati.
Projects Reach Out to Patients and Clinicians
With funding from PCORI, ICN is also working on several projects. The network has surveyed patients, parents, and clinicians about their objectives and outcome priorities (patientpriorities.com), which will result in a community-generated list of research priorities.
The ICN team has launched a campaign to raise awareness of ICN among patients with inflammatory bowel disease and their families and develop leadership capabilities at local care centers. It also has developed training and resources to teach clinicians and parents how to work together.
At the forefront of ICN’s engagement effort is college senior Sami Kennedy, who serves with David as co-chair of the Patient Advisory Council. Her message is, “No matter what your personal narrative as a patient is, recognize that you have expertise and you have something to contribute.”
“There are clinicians who want to work with patients but don’t know how, and patients who want to work with clinicians but don’t know how—or assume they can’t. ICN is bridging that gap,” says Kennedy, who will be starting medical school this fall.
Currently, patients and families are leading not only outreach efforts but also development of new technology for the clinic and research, such as apps to track symptoms. They are also collaborating in the clinical decision-making process, traditionally a task left to medical professionals. Seid says that David’s choice of an ostomy over surgery is “a great example of the kinds of choices that patients wrestle with and an illustration of the outcomes they may value.”
As a result of her experience, David is leading the development of a toolkit to educate ICN patients about ostomies. “I would really, really love to see ostomies spoken about sooner. By the time you need ostomy surgery, you’re often so sick that there’s no room for education.”
She says that ICN brings in the patient perspective, a piece that was missing when she was facing her surgical decision. She explains, “As patients, we know something differently than the doctors. It’s not less or more valuable, it’s just different. That’s why it’s so important to have everyone at the table.”
ImproveCareNow: A Learning Health System for Children with Crohn's Disease and Ulcerative Colitis
Principal Investigator: Peter Margolis, MD, PhD
Goal: To implement a full-scale system in which patients with inflammatory bowel disease and their families, as well as clinicians and researchers, work together to conduct research to improve health outcomes, and develop the infrastructure to assemble a comprehensive set of longitudinal patient-centered data.
Posted: June 2, 2015; Updated: July 26, 2017
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