How We Do Business
The Crohn’s & Colitis Foundation strives to maintain the highest ethical standards across our Foundation; to be thorough, accurate and unbiased in all the information we present; and to consistently keep patients front and center in everything we do. Below, you'll find descriptions of the processes we follow to ensure our actions are in line with our core values.
- Putting Our Patients First
- As the leading non-profit research, education, support and advocacy organization of the IBD community, the Crohn’s & Colitis Foundation works closely with all members of the community – patients, caregivers, healthcare providers, researchers, other non-profits, and corporate partners. In accordance with our core values, the Foundation works to ensure that patient needs are met by incorporating their voices into all our efforts.
- The Foundation’s research, education, support and advocacy programs and initiatives are driven by the Foundation’s strategic plan, our annual planning process, and by our research priorities, as described in Challenges in IBD Research:
- The strategic plan is developed through input from patients, providers, caregivers, volunteers, and Foundation staff over a rigorous year-long process. The Foundation revisits this process every four years to ensure that we remain up to date on the needs of the patient community.
- The Foundation develops its research priorities, published as Challenges in IBD Research, by convening scientists from within and outside the field of IBD, as well as pediatric and adult gastroenterologists, surgeons and other clinicians, industry leaders, patients and caregivers, plus members of the Foundation’s National Scientific Advisory Committee (NSAC) to redefine priority focus areas. The Challenges effort engaged around 100 people, who formed five multidisciplinary workgroups to generate the Challenges in IBD Research publication, which now drives our research priorities.
- Working with Corporate Partners
- The Foundation has multiple sources of revenue including donations from individuals and private foundations, as well as corporations, which include a range of healthcare companies and other organizations that have an interest in engaging with the IBD community.
- We are incredibly grateful to our corporate partners who support the Foundation’s mission, but we are scrupulous in maintaining our objectivity and focus on patient priorities in all we do. We have put policies in place to ensure we maintain our independence from the healthcare industry, including:
- There is language in all our contracts and agreements that ensure our independently researched and evidence-based point of view will be expressed in all our work.
- No sitting board members on the national or local levels are currently employed in the pharmaceutical industry.
- All staff and Board members sign annual "conflict of interest" statements to ensure that the Foundation is aware of any conflicts in program development.
- We never recommend any one treatment or medication in our educational materials or communications, nor do we refer to any drugs by their brand name.
- Expert Advisors: Patients & Professionals
- All education and advocacy programs are developed by Foundation staff, with guidance from volunteer members of our National Scientific Advisory Committee (NSAC), as well as patient and caregiver volunteers.
- Patients participate in our research review committees, and in the development of our research priorities (the Challenges in IBD Research project).
- Our program sponsors and donors, including our pharmaceutical partners, have no influence in the selection of topics, the development of the content, or the selection of speakers for our programs.
- All of our advocacy and education priorities, as well as the specific programs and materials we create, are developed through an extremely thorough, in-depth vetting process. Though some organizations and journals may use a single medical advisor to review their materials, we receive input from a committee of top thought-leaders and medical advisors, as well as patient and caregiver partners. This generally includes the following stakeholders and data sources:
- “Landscape analyses:” These studies identify gaps and needs through a review of best practices from other organizations and evidence-based literature reviews
- Patient and caregiver focus groups
- National Board of Trustees Advocacy committee
- Selected groups of patient and caregiver reviewers, including where appropriate, input from National Council of College Leaders, Clinical Trial Ambassadors, and other patients/caregivers who have expressed an interest in volunteering their time to review and create materials
- National Scientific Advisory Committee members, including IBD physicians, researchers, advance practice providers, nurses, physician assistants, psychologists, dieticians/nutritionists, and other providers throughout the United States
- Outside Ethics Advisors
As the hub of the IBD community, the Crohn’s & Colitis Foundation has developed a deep trust with the constituencies which we serve, and we strive to protect, nurture, and maintain that trust in all we do. To ensure our work is always conducted in the best interest of our stakeholders and that it is not negatively affected by conflicts of interest, the Foundation utilizes an ethics committee that serves as an independent body to:
- Provide input and guidance on Foundation programs and policies regarding interactions with patients, providers, and sponsors
- Address conflict of interests to avoid real or perceived bias
- Ensure stakeholder involvement with the projects is appropriate and consistent with the Foundation’s mission
- When necessary, aid in proposal selection evaluation to ensure appropriate use of patient data and biosamples, as well as the protection of patient privacy
The ethics committee is chaired by an independent bioethicist and includes:
- The Chair-elect of the Foundation’s National Scientific Advisory Committee
- Two members of the national board of trustees
- An independent research methods expert who does not receive research funding from the Foundation, an academic clinical investigator, and two patients and/or caregivers
Learn more about this committee and the importance of mitigating financial conflicts of interests in a recently published study by Foundation staff and our ethics committee chair.
- Education, Support, and Advocacy Philosophies
The Crohn's & Colitis Foundation will ensure all education, support, and advocacy programs embrace and deliver on the following philosophies and standards for engagement:
- All information, education, and resources will reflect current evidence-based approaches to diagnosis, treatment, and management of inflammatory bowel disease (IBD).
- We engage patients and caregivers in the planning, execution, and delivery of programs, working side-by-side with a multi-disciplinary team of healthcare professionals.
- Our speakers and panelists will represent the diversity of the IBD patient and professional communities, creating an environment inclusive of all IBD patients and their experiences.
- Programs and resources will be culturally relevant and include experts to ensure cultural competency.
- Our content and resources will reflect learning preferences offering content in various forms, including in-person, digital, audio, written platforms, and other evolving educational modalities.
- Our content and resources will support health literacy and ensure materials target the audience's educational level from grade school to post-graduate and everyone in between.
- Our programs will strive to increase patient and provider communication and shared decision-making to impact remission.
- Our programs will encourage and promote health confidence through education, support, resources, and engagement.
Our programs will strive to improve the quality of life and impact pediatric and adult patients' understanding of remission through education, engagement, and support. As a convener, the Foundation will engage the IBD community through collaborations and partnerships, including other IBD patient and professional organizations, healthcare practices, education companies, and other non-profits.