In September 2020, DiabetesMine worked with a group of patient advocates to help shed light on the experiences of BIPOC (Black, Indigenous, and People of Color) with diabetes technology and care.
What we found out was both unsurprising and eye-opening.
Our survey showed that BIPOC respondents with diabetes share the same key concerns as white people with this condition about cost and access, lack of empathetic doctors, and lack of resources. It’s unsurprising that all people with diabetes (PWDs) share these struggles.
But what was eye-opening for us was how strongly the respondents felt unrepresented, which was often paired with feeling judged or stigmatized by doctors, and being given minimal or even false advice, like a misdiagnosis.
For example, consider these answers to our question about “your worst experiences with diabetes care”:
- “Being stereotyped as not taking care of my diabetes since some endocrinologists… don’t understand that not all bodies are the same and some treatments are not compatible with everyone’s everyday routine.” — female T1D, Black and Latino
- “When I was first diagnosed the urgent care/local physician told me ‘you have it’ and that’s really it. No education or anything. I went into DKA and almost died.” — male T2D, Latino
- “Medical providers may not even be aware of the disparities… such as work schedules and access to reliable transportation that (create) challenges for BIPOC compared to professional white workers.”— male T1D, American Indian/Indigenous Peoples
This video, compiled as part of a larger BIPOC project for our Fall 2020 DiabetesMine Innovation Days event, helps sum up the thoughts of many calling for increased cultural sensitivity in diabetes care:
Back in early 2020, we had approached a group of BIPOC diabetes advocates with the idea of hosting a roundtable discussion on the topic of inclusivity at our fall innovation event.
The aim was to support them in publicly sharing their healthcare experiences to help unveil what’s been left unsaid for far too long.
This amazing group — including Ariel Lawrence, Quisha Umemba, Mila Clarke Buckley, Kyle Banks, Cherise Shockley and Joyce Manalo — was enthusiastic but insisted that they alone couldn’t speak for the broader BIPOC community.
To bring in more voices, it was their idea to create the compilation video above, and conduct a survey that would allow a much broader swath of experiences to be shared.
With the help of these leaders and an additional dozen BIPOC diabetes advocates, we crafted a survey for online distribution in September 2020.
To qualify for participation, respondents had to be at least 15 years old, have diabetes themselves or care for someone who does, and identify as a member of the BIPOC community.
We used a combination of quantitative and qualitative (open-ended) questions to explore four core things:
- their experiences with doctors and other healthcare providers (HCPs)
- their access to and experience with diabetes technology
- whether they feel represented in the diabetes sphere
- what they believe differs in their own experiences versus that of white people with diabetes
A total of 207 people completed the survey. They were evenly distributed around the United States and identified as follows:
- 91 percent insulin users
- 9 percent caregivers overseeing someone using insulin
- 74 percent female
- 42.25 percent Black
- 30.48 percent Hispanic or Latino
- 13.9 percent Indian, South Asian, or Middle Eastern
- 10.7 percent Asian
- 2.67 percent multiracial or not included above (includes Pacific Islander, American Indian, Indigenous, and Native Peoples)
Overall, the group was fairly heavy technology users, with:
- 71 percent using an insulin pump
- 80 percent using a CGM
- 66 percent using a smartphone app to aid their diabetes care
We also collected data on where, pre-COVID-19, respondents were getting their core diabetes care, and what main sources they rely on for information about diabetes technology options.
All those details are included in our results overview video.
When asked to “Please rate your most prominent feelings about your interactions with healthcare professionals throughout your diabetes journey” on a quantitative scale of 1 to 10, most respondents gave positive answers:
- 65.4 percent said they feel respected
- 59.6 percent feel listened to
- 36.7 percent feel comfortable asking questions
And a smaller percentage gave negative answers:
- 17.6 percent feel talked down to
- 14 percent feel stereotypes are at play
- 13.2 percent feel disrespected
But the copious answers to our open-ended questions on “biggest challenges” and “worst experiences” seemed to show a different picture emerging.
We tallied trends in the comments and found that among insulin users:
- 27 percent mentioned lack of empathy among HCPs
- 13.2 percent complained of lack of education among HCPs
- 11.4 percent experienced a misdiagnosis
Among non-insulin users, a full 30 percent complained of lack of knowledge among doctors on the latest diabetes technology.
In the comments section for biggest challenges overall with diabetes, many people talked about technology being out of reach because it’s too expensive.
But they also commonly mentioned challenges associated with race.
People talked about feeling stigmatized by their HCPs and not being given important baseline information at diagnosis — which many respondents associated with a lack of respect or low expectations by the doctors treating them.
Among those who mentioned misdiagnosis, a common theme was that HCPs were making “spot judgements” about them having type 2 diabetes simply based on their looks — a form of healthcare racial profiling that needs to be eradicated.
Getting to the heart of the inclusivity issue, we asked respondents: “As a BIPOC, do you feel represented when you see commercials for diabetes services and treatments?”
A full 50 percent of all respondents said not at all, with many adding comments on this issue:
- “Biggest struggle is just being seen and represented and heard!” — female T1D, Black
- “(It’s difficult) accepting this disease and the feeling of loneliness since my race is not represented at all when it comes to diabetes.” — female T1D, Black
- “I need to see people who are using the products that represent a diverse population.” — female T1D, Black
We asked whether the respondents had ever been contacted by a diabetes company to be part of a team, committee, or study.
A somewhat surprising 22 percent of respondents said they had.
In a follow-up question about perceived intention, 41 percent said they believed the company in question was genuinely concerned about them and their community, while 27 percent “felt like it was more for show/making a quota.”
The rest checked “other” — and here we got an interesting mix of positive and negative comments. Some said they had served on focus groups and were thankful that companies value their opinion.
Others said things like:
- “They did not ask questions about race and were uncomfortable when I brought it up. I assume they thought I was white.” — female T1D, Indian/South Asian
In fact, there were several mentions of being able to “pass for white” and the difficulties that can create for some BIPOC.
This comment summed up a recurring sentiment:
- “Device & pharmaceutical companies are a little more diverse than they used to be, but there is still a long way to go.” — male T2D, Black
We also asked, point-blank: “What do you think is different — if anything — about how you as a BIPOC receive diabetes care and education, versus white patients?”
The majority of those leaving comments indicated they didn’t believe they were getting fundamentally different care, but they had concerns about diversity and a lack of understanding among physicians:
- “(What’s lacking is) awareness. Healthcare feels like a one-size-fits all approach…” — male T1D, American Indian, Indigenous, or other Native Peoples
- “I took me a while to think about this… For me personally I haven’t noticed a difference in the care I have received versus my white friends with T1D. However, growing up I noticed a distinct lack of BIPOC representation in diabetes education materials for T1D.” — female T1D, Hispanic or Latino
- “I think I receive the same care as white people but I have experienced physicians or doctors trying to educate me more about my diabetes since I ask questions and not taking certain symptoms I have as seriously because I appear healthy and my A1C is just higher than normal. That’s because there’s not a diversity of endocrinologists and physicians yet.” — female T1D, Black
- “My experiences have been positive, but it would be cool seeing more POCs in the field. Seeing someone who looks like you can have a profound difference on patient-provider relations.” — male T1D, Black
For more survey results, watch here.