The Crohn’s and Colitis Foundation, the American Gastroenterological Association (AGA) and Pfizer recently presented the results of a request for proposals to devise interventions aimed at improving shared decision-making and more effective communication between inflammatory bowel disease (IBD) patients and their doctors.
“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,” Laura Wingate, a senior vice president of the foundation, said in a press release. “While there are tools to support shared decision-making, there are often barriers to implementation.”
As a result of this request for proposals, two projects will receive a total of $500,000 from 2018 to 2019 to fund research.
Applicants were encouraged to design programs that explored or addressed gaps in communication in areas ranging from lifestyle to social issues and challenges related to determining treatment programs.
The winning projects were selected based on their potential to overcome barriers by helping to identify and set up best practices around shared decision-making. The projects also share potential to be easily replicated, broadly disseminated and widely adopted within the IBD community.
The projects are titled “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” and “IBD&me: Optimizing Selection of Biologic and Small Molecule Therapies in IBD.”
The first project will be led by Gary Maslow, MD, at Duke Health. A team will examine how feasible, acceptable and effective a peer health coaching intervention can be for young adults with IBD as they enter the adult health system.
Young adults often lack the skills of self-management and independent healthcare navigation to adequately communicate with their doctors about their symptoms and their related life and health concerns.
“Peer-based coaching is a novel idea in IBD,” Maslow said. “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,” he said.
The second project will be led by Brennan Spiegel, MD, at Cedars Sinai Medical Center. A team will conduct a multicenter, randomized, controlled trial to assess the affect of IBD&me on patient perceptions of shared decision-making when compared to standard education.
IBD&me is a program created to help patients and their doctors choose the biologic that is right for them and their IBD. Spiegel’s team also will study how IBD patients navigate and decide on a certain therapy when selecting among current and emerging therapies for their specific IBD.
“The study will help us understand how patients using IBD&me perceive its impact on communications with their providers,” Spiegel said. “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.”
The request for proposals steering committee included an IBD patient, key stakeholders, experts in shared decision-making and community and practice providers.
“Having open and honest discussions with their healthcare 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,” said Siddharth Singh, MD, a member of AGA who served on the steering committee of this project.
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