Changing the Research Paradigm with a Patient–Powered Network

By creating a username and password at www.ccfapartners.org, IBD patients can access information and tools to track, better understand, and manage their disease, while also helping to shape the program’s research agenda by posing and voting on research topics. This patient–centered research portal is the first of its kind in the field of IBD for adults and will enable critical research to be conducted.

“CCFA Partners builds and strengthens alliances between the IBD patient and scientific communities,” said Michael Kappelman, MD, MPH, Associate Professor, UNC, and scientific director of the initiative. “We’re empowering patients to be more directly involved in all aspects of research, including the generation of and influence on research topics and in network governance. Those who contribute will benefit the most, because we’re also designing mechanisms to more effectively share research findings with network participants.”

As multi–factorial diseases, it is extremely difficult to identify the causes of IBD, yet understanding what is involved in disease onset and progression is critically important to identifying better treatments and, ultimately, cures. Only patients can provide information about their day–to–day disease experience and it is this data, gathered over time, that researchers need to make progress in areas that matter most to IBD patients: health behaviors, disease symptoms, and quality of life.

“At first, IBD made me feel powerless,” explains Jessica Burris, a 27–year–old medical student who was first diagnosed in her early teens. “There were so many medicines, and lifestyle changes to make, and new diets to try… I was becoming an experiment on myself, where I was researcher and test subject at the same time. I needed help to understand and manage what was happening so I could make the best choices. Carefully tracking my day–to–day behaviors and how I was responding–or not–to a specific treatment made me feel more in control. And participating in important research makes me feel proactive, not just a victim.”

Launched in 2011, CCFA Partners has currently enrolled over 13,000 IBD adult patients, with plans to increase to 30,000 patients by early 2016.  IBD patients who participate complete an online survey every six months, and can contribute day-to-day data by linking their health-tracking device (e.g., Fitbit, etc.) to its website. Patients can access their information and also see how their individual health data compares with other IBD patients. CCFAPartners.org also provides access to apps and tools to help empower patients and better manage their disease.

Robert S. Sandler, MD, MPH, is a Professor of Medicine at UNC and a CCFA Partners investigator.  “One of the greatest promises of new information technologies for research is the ability to aggregate large numbers of patients’ experiences in a timely manner, to inform study design and provide real-life answers to questions about chronic diseases,” he notes.  “As its capacities are expanded, CCFA Partners holds real promise of changing the paradigm of IBD research. As ‘citizen scientists,’ IBD patients can, themselves, play a vital role in speeding new treatment discovery and development.”

CCFA Partners received a nearly $1 million award from the Patient–Centered Outcomes Research Institute (PCORI) to develop and expand, making it one of 29 individual networks that form PCORnet: the National Patient-Centered Clinical Research Network, a secure, data network intended to improve the speed, efficiency, and use of patient–centered comparative effectiveness research (CER). CCFA continues to fund both CCFA Partners and CCFA Partners Kids & Teens.

About CCFA
The Crohn’s & Colitis Foundation of America (CCFA) is the largest voluntary non-profit health organization dedicated to finding cures for inflammatory bowel diseases (IBD). CCFA’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults who suffer from these diseases. The Foundation works to fulfill its mission by funding research, providing educational resources for patients and their families, medical professionals, and the public, and furnishing supportive services for those afflicted with IBD.

CCFA has funded more than $250 million in research. In the past five years, researchers have made significant inroads in the study of genetics, as well as the gut microbiome. CCFA is dedicated to advancing research for both adults and pediatrics, and this year alone will invest over $21 million and fund investigators in the U.S., Canada and over a dozen foreign countries. For more information, visit www.ccfa.org, call 888-694-8872, or email [email protected].

About the UNC School of Medicine
The University of North Carolina School of Medicine is a nationally-ranked public medical school with campuses in Chapel Hill, Asheville, and Charlotte. Its mission is to be the nation’s leading public school of medicine. In 2014, the UNC School of Medicine was ranked 14^th in NIH research funding and 1st in Primary Care in U.S. News & World Report’s Best Medical School Rankings. It is one of the few in the nation to excel at both teaching primary care skills and the fostering of research careers. The School of Medicine was established in 1879 and offers degrees in the fields of medicine, allied health sciences, and biomedical sciences.