Industry funding of patient and health consumer organisations: systematic review with meta-analysis

Dear Editor,

As discussed by Fabbri, Parker, Colombo, et al. (BMJ 2020;368:l6925), industry financial support of patient advocacy organizations (PAOs) has become very common in recent years, yet robust efforts to mitigate financial conflicts of interest (FCOI) are still limited. This is a very important topic to consider and one that the Crohn’s & Colitis Foundation has taken very seriously.

Like many other PAOs, the Crohn’s & Colitis Foundation has developed a deep relationship of trust with patient and provider communities involved in inflammatory bowel disease (IBD) and agrees with the authors that transparency is a key component of preserving this relationship. In fact, the Foundation has a dedicated page on our web site outlining how we do business (https://www.crohnscolitisfoundation.org/about/transparency). Clearly, succinctly, and for all to see, the transparency page details our patient-first policy, how we work with corporate partners, and our engagement with IBD experts and outside ethics advisors.

As catalyst and convener for the IBD community, it is imperative that we maintain the foundation of trust built in the 50 years since our inception. In 2016 the Foundation created a standing, independent ethics committee to bring independent expertise to guide the Foundation, in a systematic manner, as it weighs collaboration opportunities with industry. With the guidance of the ethics committee and through our commitment to transparency, we maintain this critical relationship while continuing to serve the IBD community to advance the field through research, education, support, and advocacy.

The Crohn’s & Colitis Foundation, in collaboration with our Ethics Committee Chair, recently published a paper in BMC Medical Ethics (1) to provide background on the changing role of industry-PAO relationships in recent years, including the benefits and concerns of these relationships. The goal of the article is to provide an overview of how the Foundation has worked to mitigate financial conflicts of interest through the creation of our ethics committee and details on how other PAOs can consider this strategy for improving their processes.

For instance, our ethics committee is charged with:
• Assessing collaborations with industry, including policies for these initiatives;
• Providing input and guidance on our programs and policies regarding interactions with patients, providers, and sponsors, including human subjects protections and mechanisms for recruitment of research participants;
• Ensuring any conflicts of interest in the activities performed by the Foundation are appropriately managed, including the level or type of involvement by the supporter.

While collaborations with industry can result in conflicts of interest, PAOs can develop strategies to address those conflicts. We encourage other PAOs to consider ways to address financial conflicts of interest, including creating an ethics committee and reviewing the best practices that we provide in the article.

Caren Heller, MD, MBA
Chief Scientific Officer
Crohn’s & Colitis Foundation
www.crohnscolitisfoundation.org

Laura Wingate
Senior Vice President, Education, Support, & Advocacy
Crohn’s & Colitis Foundation
www.crohnscolitisfoundation.org

Orna Ehrlich, MPH
Senior Director, Professional Education & Innovative Programs
Crohn’s & Colitis Foundation
www.crohnscolitisfoundation.org

Inmaculada de Melo-Martin, PhD, MS
Division of Medical Ethics
Weill Cornell Medicine
Chair, Crohn’s & Colitis Foundation Ethics Committee

References:
1. Ehrlich, O., Wingate, L., Heller, C. et al. When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest. BMC Med Ethics 20, 96 (2019). https://doi.org/10.1186/s12910-019-0435-1