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CCFA president highlights new initiatives in AIBD opening session
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ORLANDO — In the opening presentation at AIBD 2016, Michael Osso, president and CEO of the Crohn’s & Colitis Foundation of America, highlighted many new initiatives planned for 2017, the CCFA’s 50th anniversary year.
“We sit at the hub of the IBD community,” Osso said. “Our role has been and will continue to be convening stakeholders in the IBD space, not unlike this meeting,” which has record attendance and the largest number of submitted abstracts this year, he noted.
Among these stakeholders, including health care providers, researchers and caregivers, “patients are always at the center of everything we do,” Osso said. “We aim to engage them, to bring their needs and their voices to the table in a very explicit way, and we’re going to be doing that increasingly in the next several years.”
Patient-centered focus
Highlighting current successful initiatives, Osso described how the 32 patients in the CCFA’s Patient Education Advisory Committee helped develop programs and “steward the direction of the organization.” For example, this committee played an integral role in recently developing a new colorectal cancer education program aimed at educating patients and caregivers, as well as the CCFA’s Clinical Trials Community, which will launch in first quarter of next year and will provide education and support programs for patients.
Another patient-driven program, CCFA Partners, involves an online cohort of 15,000 patients that participate in the research process, in part by contributing patient reported outcomes, but also by contributing feedback and posing research questions.
“In fact, one patient question was the impetus for what will be the largest, most expansive diet and nutrition study in IBD,” Osso said. This study, led by Jim Lewis, MD, of the University of Pennsylvania, will compare the specific carbohydrate diet and a Mediterranean style diet.
In 2017, the CCFA will also launch an online support group for caregivers: “the parents, the spouses, the family and friends that support the patient in this journey,” Osso said. “We want to be bringing tools and support services to caregivers as much as the patient themselves.”
Other CCFA efforts aim to engage both patients and providers at the same time.
Patient-provider convergence
Just a few months ago, the CCFA launched a new program called Clinical Convergence: Patient and Provider Perspectives in IBD, which facilitated structured conversations between patients and providers. “We’re in the process of developing a web-based course along these lines, [as] it was a terrific event and highly rated by both the patients and providers,” Osso said.
Similarly, IBD Qorus, the CCFA’s quality of care initiative, is expanding, with 20 gastroenterology practices currently involved in the network, and an additional 10 expected to join in 2017.
“The spirit of it is shared decision making, and raising the quality of care that is delivered,” Osso said. “We have launched two care pathways inside of that — one for anemia and one for nutrition — and already we’re seeing differences and positive changes in the way care is being delivered at those 20 sites. Our aim is to continue to expand the number of sites until it’s hundreds of sites all across the country.”
Finally, Osso noted that the CCFA plans to bring greater focus to psychosocial issues by launching new programs to educate patients and providers about depression and anxiety in 2017.
Research initiatives
Osso also highlighted the progress in IBD research made in 2016, throughout which the CCFA invested $32 million in a variety of research efforts.
These include the Broad Medical Research Program, which funds innovative pilot research; the CCFA’s Genetics Initiative, which resulted in the identification of 13 new proteins and pathways; its Microbiome Initiative; FARMM, a diet study comparing vegan, omnivorous and defined formula diets; and a pediatrics research program called Risk Stratification, the largest new-onset cohort of pediatric Crohn’s patients.
In terms of future research investments, the CCFA will launch its new Environmental Triggers initiative in 2017, which will involve a multidisciplinary task force that will study diet, viruses, the gut–brain axis, other environmental factors.
Osso concluded that in CCFA’s ongoing mission to bring together patients, providers, caregivers, researchers, volunteers, donors and other nonprofit partners to improve IBD care and education, “we’re proud to play the role of convener and catalyzer.” – by Adam Leitenberger
Reference:
Osso M. “Welcoming remarks.” Presented at: Advances in Inflammatory Bowel Diseases; Dec. 8-10, 2016; Orlando, Fla.
Disclosures: Osso is the president and CEO of the CCFA.