Behind the Scenes of Healthcare Disparities in IBD

Behind the Scenes of Healthcare Disparities in IBD

In 2018, I was doing on-site interviews for About IBD Podcast. I was attending a medical conference and there were several other patient influencers there as well. It was an opportunity to get a lot of audio recorded for production of several upcoming episodes.

I love recording in person. I’ve recorded in all sorts of spaces: show floors, hallways, and press rooms. I try to use my own hotel room, or even my basement, when I can and when it makes sense. I was conducting interviews in my room in Chicago when Shawntel Bethea and Brooke Abbott, of The Crazy Creole Mommy Chronicles, showed up at my door.

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You Can Never Bring Too Many Microphones

Having three of us on one episode wasn’t the original plan, but I decided to change it up. I only had two microphones with me at the time. I set them up in front of Shawntel and Brooke and leaned over to Brooke’s microphone when I asked a question. Not the best setup for post-production but between giggles, we made it work.

I asked them to tell me about their experiences as Black women living with IBD. I didn’t know if that was something they were interested in exploring but they both agreed on the topic enthusiastically. 

I was not prepared for what they shared with me, and thereby with About IBD listeners, during the hour we recorded. The harms they experienced at the hands of medical staff and the health care system were shocking. Even though they were colleagues and friends, and I’d heard their disease journeys before, there were plenty of additional events they shared. The trust they placed in me was humbling. It was intimate. It was raw. It was an exploration of the disparities faced by historically marginalized communities in the IBD space and how they are systemically buried.

Do I Belong In This Space?

I wanted to do more on this topic but didn’t know where to begin. So I started with what I knew: podcasting.

I saw an opportunity to get funded through the HealtheVoices Impact Fund. I thought it was a long shot, but I applied for funding from this program so I could produce a show called Healthcare Disparities in IBD (HDIBD)

I had concerns about being a straight, cis, white person covering the experiences of people of color and lesbian, gay, bisexual, transgender, queer or questioning, intersex, and asexual (LGBTQIA+) people. Every white person I talked to told me that I probably shouldn’t go forward with this project. Every person of color I talked to said that I should.

I was awarded the grant in the fall of 2018 to produce HDIBD. I was overwhelmed and also surprised. It was going to be the first podcast production exploring disparities in the IBD space and the stakes felt very high.

Your Project is Funded! Now What?

I began planning in earnest, deciding how to make this show on a modest budget with the highest quality I could manage. I also had a lot of learning to do, in reading both about the experiences of people in the community as well as the academic and clinical studies that have been done.

The plan was to record with as many guests as possible, in-person, during the first and second quarter of 2020. However, the pandemic hit and I had to move everything virtual. I had experience with virtual recording but not as much as I would have liked. I also hadn’t budgeted for that because, believe it or not, virtual recording done right is more expensive.

It made everything move slower. Rather than recording a slew of interviews on a trip to DC or Chicago, they were spaced out to accommodate schedules and the collective trauma of what everyone was coping with in their personal and professional lives.

The terms of the grant are that HDIBD needed to be a stand-alone project. It couldn’t be released on the About IBD stream, and it needed its own sound and its own branding. 

I was, thankfully, once again able to enlist my collaborator, Mac Cooney, of Cooney Studio, for the creation of the theme music, the transitions, and the audio engineering. I gave Mac an idea of what I hoped to do and some loose thoughts around what the show should sound like, and he composed the theme music. I remember telling him that it was really important that we got this project right, but that we had budget constraints, and I wanted to keep that in mind for his time and energy. 

He sent me a piano demo for the HDIBD theme. Even on a first listen, I knew it was more than I even knew I wanted. It was at that point that I think I understood how meaningful this project would be, how it could take shape, and what we were capable of achieving.

Always Budget for Twice the Time

However, every aspect of the pre-production was harder than expected. I pivoted and altered my guest list, my plans, and where the series was headed several times, because current events were moving so quickly that it was challenging to keep up. I changed my language and the terms I was using in the middle of production. I couldn’t stretch the budget to hire a graphic artist and a transcriptionist and other support staff as I would have liked to do.

There were many other personal and professional problems that threw unexpected roadblocks in the way, but we somehow managed to work around all of them.

Episode production is difficult but also so rewarding. The easiest part was finding guests: everyone I approached to be interviewed said yes. Not only said yes, but during the interview they threw themselves into the project, directing me, putting me on a different course, and taking me to the places they’ve been that I didn’t know existed. It was my intention to be a conduit, leveraging my privilege and my knowledge of the podcasting space to bring the pieces together in an audio story. It was the interviewees who were the directors and producers.

However, we were creating all these pieces while not knowing how they would come together, which made me really nervous. But they did click and hold together, in the most magical and seamless way. Once the interviews were edited, the music, the transitions, and the intros all flowed. I couldn’t get over how it all felt right.

We premiered HDIBD during April of 2021, which is National Minority Health Awareness month. The original plan was for 6 episodes but we managed to also produce a bonus 7th episode.

In the months since the premiere, it has been interesting to see the increased attention to this topic. The inequities run deep, and while we are now uncovering what some of them are, there’s still little being done to actually address them. There’s resistance to the idea that disparities even exist in the health care space, let alone in the IBD community.

There’s not much yet in the way of taking ownership and displaying personal responsibility for equity from those who are not affected by the disparities. There are still areas where the community is not including, or is actively discouraging, participation from people of color.

HDIBD Needs a Second Season

I have applied for more grants to continue HDIBD into a second season. However, as of this writing, I have not been able secure funding. My vision is to produce a second season that is hosted by a POC, with my roles being director and producer. 

I’m putting this into the universe because it is clear that there is a need, and I know there’s a way. I just haven’t found it yet. Once again, there are many obstructions in the path, but I’m going to find my way around them again.

Have something to say, or better yet, an unrestricted educational grant burning a hole in your pocket? Get in touch with me here.

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