Our approach to ethics & putting patients first

As a patient advocacy organization, the Crohn’s & Colitis Foundation is committed to improving the quality of life for patients and finding cures for IBD so that one day, we will be able to close our doors for good. To fund our cause, we raise money from multiple sources, in order to reinvest those donations into research, education, support and public policy initiatives. Our donors include healthcare companies, as well as many individuals, private foundations, and other organizations that have an interest in engaging with the IBD community. 

We aren’t alone in this; corporate financial support of health nonprofits is very common, with one study showing that at least 83% of the 104 largest patient organizations in the United States receive financial support from drug, device, and biotechnology companies.

We often receive questions about how we maintain our focus on what is best for IBD patients, and how we address conflicts of interest. Every organization undoubtedly has their own policies on how to keep the best interests of their patients in mind. But we take a variety of significant steps to maintain our focus on our patients and our mission, including a strong effort to be open and transparent about our funding sources, and to proactively take steps to ensure that the support we receive from the healthcare industry does not influence what we do in any way. Here are some of the steps we have taken, and you can learn more on our website: 

• Created a standing ethics committee: Since 2016, we have maintained a standing ethics committee which our staff and volunteers can utilize to assess our collaborations with industry among other areas to ensure that any conflicts of interest in our programs and activities are appropriately managed. This is an approach commonly used in academia but not seen among patient advocacy organizations. 
• To date, our ethics committee has reviewed 17 requests and advised the Foundation about important decisions related to various collaborations that raise potential concerns about financial conflicts. Some examples include advising the Foundation on parameters for potential partnerships; providing parameters for how the Foundation should interact with companies that are running clinical trials and want to engage with our Clinical Trials Finder; and providing ethical considerations for establishing new sponsorship programs. 
• We never recommend a specific drug or treatment in our educational materials or communications, nor do we mention any medications by brand name. 
• We use patient advisors to review our educational materials, sit on our ethics advisory committee and our grants review committees, and to join many of our strategic planning sessions.
• No member of a drug, device, or biotechnology company is allowed to sit on our national or any of our chapter boards or scientific advisory committees.

We recently published a paper in BMC Medical Ethics that highlights our proactive approach to addressing the perceived ethical concerns around industry support of our work in depth. It’s an approach that we think could be considered for broader adaptation at similar patient advocacy organizations.

The biggest privilege we have is being a trusted resource for the IBD community. We want you to know that we will keep doing everything in our power to continue being open and transparent about how we conduct our activities, to put patient needs at the forefront of all of our efforts, and to be accurate in reporting information and the outcomes of our efforts. We encourage other patient advocacy organizations to look at our approach and consider enacting similar efforts to address ethical issues proactively and in the best interest of the patients and caregivers they serve.

Rebecca Kaplan is the Public Affairs and Social Media Manager for the Crohn's & Colitis Foundation and the caregiver of a Crohn's disease patient.