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Leading patient, professional organizations announce funding to improve communications, address IBD shared decision-making

Funding recipients will address ways to improve shared decision-making and effective health communications.

Aimee Frank
AGA Institute
[email protected]
Jeanine Kober
Crohn’s & Colitis Foundation
[email protected]
New York, NY, April 16, 2018 — The Crohn’s & Colitis Foundation (Foundation) and the American Gastroenterological Association (AGA), in collaboration with Pfizer, Inc., have announced the results of a request for proposal (RFP) to address interventions that aim to improve shared decision-making and promote effective health communication between patients with inflammatory bowel disease (IBD) and their clinicians. 
“Research has shown that there are gaps in patient/provider communications, yet there is evidence that shared decision-making can positively affect certain patient outcomes,” said Laura Wingate, senior vice president of education, support, and advocacy for the Foundation. “While there are tools to support shared decision-making, there are often barriers to implementation.”
Two projects will be fully funded from 2018–2019 in the amount of $500,000 each, over the two years.
Patient and Caregiver Peer Coaching Intervention to Improve Patient Care and Shared Decision-Making Between Patients with Inflammatory Bowel Disease and Their Health Care Team (Gary Maslow, MD, MPH, Duke Health)
Young adults often lack the skills of self-management and independent health care navigation to adequately communicate with their providers about their symptoms and their related life and health concerns. This study will examine the feasibility, acceptability and effectiveness of a peer health coaching intervention for young adults with IBD as they navigate the adult health system. 
“Peer based coaching is a novel idea in IBD,” said Gary Maslow, MD, MPH, Duke Health. “Using tools that are a part of their everyday lives, phones and texts, young adult IBD patients will have access to a trained peer coach who can share knowledge, experience, and emotional guidance through a shared experience of living with IBD.”
IBD&me: Optimizing Selection of Biologic and Small Molecule Therapies in IBD (Brennan Spiegel, MD, MSHS, Cedars Sinai Medical Center)
This study will assess the impact of IBD&me on patient perceptions of shared decision-making when compared to a standardized education arm in a multicenter randomized controlled trial. It will also address how IBD patients navigate and make decisions when selecting among current and emerging IBD therapies.
“The study will help us understand how patients using IBD&me perceive its impact on communications with their providers,” said Brennan Spiegel, MD, MSHS, Cedars Sinai Medical Center. “IBD&me offers an online interactive decision aid to help patients navigate their treatment programs in line with their preferences and beliefs, and produces a personalized report designed to help doctors efficiently and effectively understand their patients’ preferences.” 
According to Siddharth Singh, MD, an AGA member who served on the steering committee, “Having open and honest discussions with their health care providers can help IBD patients feel more in control of their disease. It is our hope that these research projects help identify new tools that patients and their care team can use to help facilitate more informed and productive dialogues about the patient’s care.”
Applicants were encouraged to design programs or initiatives that explore or address gaps in communication in areas ranging from lifestyle and social issues to challenges related to determining treatment programs. These projects were selected for their potential to overcome barriers by helping to identify and establish best practices around shared decision-making. The selected projects also have the potential to be easily replicated, broadly disseminated and widely adopted within the IBD community. 
The projects were selected by an RFP steering committee representing key stakeholders, including an expert in shared decision-making, community and advanced practice providers, and an IBD patient. AGA and the Foundation would like to thank Brooke Abbott; Michael Gionfriddo, MD; Karen Hanson, APRN, CNP; Michele Kissous-Hunt, PA; Corey Siegel, MD; Siddharth Singh, MD; and Douglas Wolf, MD, for their time and commitment to this important endeavor. 
About AGA
The American Gastroenterological Association is the trusted voice of the GI community. Founded in 1897, AGA has grown to more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology. The AGA Institute administers the practice, research and educational programs of the organization.

About the Crohn’s & Colitis Foundation 
The Crohn’s & Colitis Foundation is the largest non-profit, voluntary, health organization dedicated to finding cures for inflammatory bowel diseases (IBD). The Foundation’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults who are affected by 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. For more information visit, call 888-694-8872, or email [email protected]