How We Do Business

• 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.

• 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.

• 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

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.

The Education, Support & Advocacy (ESA) framework guides the development of specific, strategically aligned programs, resources, and initiatives implemented by our ESA team together with our patient, caregiver, and healthcare professional advisors. The Framework works alongside our Strategic Plan and ESA philosophies.

Awareness, Outreach and Diagnosis

Shortening the time to diagnosis and accessing appropriate care

There is little awareness about IBD among the general U.S. population.¹ Through increased awareness and outreach, patients can get diagnosed earlier and get access to a treatment plan that can improve their quality of life. 

• Through our awareness programs, we encourage patients and caregivers to discuss symptoms with their healthcare professional.

• Through our outreach programs, we inform people about IBD and provide resources and opportunities to learn more about the disease and how to access appropriate care. 

Disease Management Education

Increasing health confidence and shared decision making to improve remission rates

Health confidence (confidence that you can control and manage most of your health issues) is associated with positive well-being which is associated with a positive quality of life. Shared decision making (working together with your doctor to reach a joint decision about your care) is associated with increased patient satisfaction, better engagement with their healthcare, and improved health outcomes.¹ Patients in remission are more likely to have a positive quality of life.

• We provide evidence-based disease management information and resources about IBD to patients and caregivers to increase their health confidence and the likelihood that they will engage in shared decision making with their healthcare provider.
• We provide disease management education to healthcare professionals to ensure they have the knowledge and resources to provide optimal healthcare to their patients.
• We teach the concept and value of shared decision making to encourage patients, caregivers, and healthcare professionals to engage in this practice.

Living Well with IBD

Supporting IBD adult and pediatric patients and caregivers to live their best lives

Social support, connecting to others, emotional well-being, and access to mental health resources are instrumental to a positive quality of life.

• Through our many resources, including the IBD Help Center, Camp Oasis, support groups, peer support, etc., ESA provides support to patients and caregivers in their IBD journey.
• Patients and caregivers feel that they have social support during their IBD journey through connections with other patients, caregivers, healthcare professionals, and Foundation staff.
• Patients with questions and concerns need answers. The Foundation is here to answer these questions and provide resources to address individuals’ needs and help connect them to their local IBD community.

Clinical Trials & Advocacy

Improving clinical care through IBD research; Ensuring access to care through legislative advocacy

Patients who have access to high-quality, effective clinical care, treatments, and therapies informed by IBD research will have improved health outcomes and thereby improved quality of life.

• ESA fosters engagement in clinical trials to ensure new treatments, diagnostics, and therapies are available for the IBD community.

• ESA is addressing the barriers to clinical trial engagement ensuring diversity, equity, and inclusion in IBD clinical trials.
• Findings from IBD research will be used to inform clinical care.
• The Foundation is committed to engaging the patient, caregiver, and healthcare community through legislative and policy advocacy to remove barriers to patients’ access to treatment and therapies.

[1] Agency for Healthcare Research and Quality. The SHARE Approach – Achieving Patient-Centered Care with Shared Decision making: A Brief for Administrators and Practice Leaders. https://www.ahrq.gov/health-literacy/professional-training/shared-decision/tool/resource-9.html

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.