"IBD genetics have been evaluated in more than 1,000 studies in white and Asian—primarily East Asian—populations. Although the risk is slightly lower than that of white Americans, African-Americans are at significant risk for IBD." - HopkinsMedicine.org from 2016
"We identified race-and SES (socioeconomic status)-based disparities in the content of medical and surgical healthcare, utilization of inpatient and ambulatory medical care, adherence to medical therapy, and disease perceptions and knowledge. Several studies also identified race-and SES-based disparities in outcomes for IBD, including in-hospital mortality rates and health-related quality of life." - Inflammatory Bowel Diseases from 2013
"Increased awareness and improved characterization of disease phenotypes among different ethnicities will facilitate timely diagnosis of disease, including understanding of which races may be at an increased risk for perianal disease, upper gastrointestinal involvement, and EIMs (extra intestinal manifestations)." - World Gastroenterology Organisation, from 2014
Look at the years these quotes are from. This is indicative of most of what you will find if you look for the experiences of People of Color (POC) with inflammatory Bowel Disease (IBD). These findings are not “old” by any means, but they aren’t fresh either. Given the social re-awakening of issues of inequity that occurred during 2020, we need to look again with clearer vision.
Researching POC with IBD
I have attended more healthcare-centered video conferences in the last two years, than I have live-conferences in all the years before that. A thread you can count on in any conversation whether from nonprofit patient support groups, foundations, large institutions, or giant corporations is Diversity, Equity & Inclusion.
People of Color with inflammatory bowel disease have different experiences with things like:
- How their different cultures approach sickness
- Trust in conventional medicine or clinical research
- Belief in alternative therapies
- Access to expert providers
- Gaslighting or medical and non-medical discrimination
Some time spent at ClinicalTrials.gov, a database of privately and publicly funded clinical studies conducted around the world, revealed little. When searching “Inflammatory Bowel Disease” with “People of Color” and a wide variety of racial and ethnic terminology, there are less than ten recruiting studies occuring in the US.
What we decided to do
We could wait, but waiting has not served marginalized communities well. This is why Patients Rising reached out to some of our friends, including:
Then we talked, we looked, and put together a project that could answer questions that needed answering. That is how the Engaging People of Color with Inflammatory Bowel Disease project was created.
Patients Rising reached out to some trusted sponsors who had kindly supported previous projects. Takeda pharmaceutical company and Jannsen pharmaceuticals answered the call and provided funding for the project because they believed in what we could accomplish.
We developed a survey as a means of asking different communities of Color about their experiences and attitudes. By collecting and analyzing the lived experiences of POC with IBD we will then build resources that directly respond to their expressed concerns and needs.
Here’s how you can get involved…
Participating in the Project
If you are a Person of Color with IBD, or the caregiver to someone who is, you can respond to the survey. If you do we’ll send you a $20 gift card – a small token of appreciation for your time.
In the survey, we ask questions about
- how long it took to get diagnosed
- the kinds of doctor/s who manage your disease
- what role is insurance playing in your care
- how is IBD impacting your life
- which obstacles stand between you and access to the best care
Even better, at the end of the survey you will have the freedom to say whatever you want in as much as you need about your experiences.
The project partners will then look at every response. We’ll put our heads together and figure out how we can serve you based on what you tell us. We are working with the groups mentioned above, but also with patient advocates, statisticians, survey experts and more.
UPDATE 1/27/2022
The survey is now CLOSED to new entries. The data collected from the survey is now being analyzed.
Jim Sliney is a writer, editor, and certified medical assistant with 20+ years of experience in healthcare and clinical research. He is the director of patient outreach at Patients Rising where he creates opportunities for collaboration, advocacy, and research while promoting equitable access to healthcare. Jim is a Columbia University trained writing consultant which he leverages to help people express themselves in a variety of media. He and his wife live in The Bronx of New York City where he’ll gladly tell you the best pizza in the world can be found. Twitter Linkedin