Trust, Inclusivity May be Key to Richer Race/Ethnicity Data | Deloitte US has been saved
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By Heather Nelson, senior manager, Deloitte Consulting LLP
Health care in the United States has rarely been equitable. Some health disparities—such as inadequate maternal care for Black mothers and their newborn children—have been well documented.1 Other inequities can be harder to uncover due to limited data. However, the collection of race and ethnicity data is notoriously inconsistent across stakeholders within the health care system—from hospitals and health systems to health plans to government agencies.2 Without this data, existing biases can go unnoticed or even be exacerbated if programs and models are not available to evaluate care quality across racial and ethnic groups.
This begs the question, why isn’t race and ethnicity information completely and consistently collected like other demographic data3 (e.g., age, address, gender)?
Many in the health care sector have heard that individuals, especially people who are not of white European descent, often are not comfortable sharing their race or ethnicity data due to concerns about how that information might be used against them. To test this perspective, the Deloitte Health Equity Institute surveyed more than 3,000 individuals to learn about their willingness to share information about their race and ethnicity. We also wanted to understand who the survey respondents were most comfortable sharing information with, and what stakeholders could do to encourage people to share.
Brandon Parrott-Sheffer, head of Deloitte’s Ethos Center for Polycultural Research, led the survey design. He has more than a decade of experience in ethnographic quantitative research and consumer intelligence across various industries (including health care systems, pharmaceuticals, medical associations, medical research foundations, and telehealth). At Ethos, he focuses on understanding how the intersections of identity and culture can shape perceptions and behaviors to help build more equitable and sustainable business solutions.
I spoke with him recently about the results of the survey. Here’s an excerpt from that conversation:
Heather: What did you find most surprising about the results of the survey?
Brandon: I went into this having seen in a number of studies that show race and ethnicity data are collected at fairly low levels across all types of health coverage—including Medicaid, Medicare, and commercial insurance. However, I was surprised to learn that over 70% of our survey respondents are quite comfortable sharing race and ethnicity information with their provider (81%), health plan (79%), government health agency (75%), or even their employer (76%). This suggests that the lack of data being collected is not necessarily driven by the individual’s unwillingness to provide that information. This could arguably be considered a bit of good news. It means there is room to improve data collection, in part, by just shifting the way the health care sector engages people at the individual level when requesting this type of information.
The survey results show that only about 6% to 8% of respondents are not comfortable sharing their race or ethnicity with health systems, health plans, and/or government health agencies. While white communities tend to show the least discomfort, the real challenge here is a significantly higher ambivalence in sharing data among Black and Brown communities when dealing with government organizations and health care plans, specifically.
In other words, the problem isn’t just about skin tone. We have to acknowledge that Black and Brown communities might have deeper, more structural reasons for not sharing their information. This suggests that more concerted efforts may be needed to address their underlying concerns…to help make them feel comfortable sharing the information.
Heather: There is a perception that individuals from under-represented or historically marginalized groups are often unwilling to share some types of personal information. However, the survey results show that most individuals are comfortable reporting race and ethnicity to others within the health care system. Is this consistent across all races and ethnicities?
Brandon: This is honestly one of my favorite tricky conversations. We had a hypothesis that traditional research was overlooking the important distinction between race and ethnicity. If we only research individuals based on the color of their skin, we might ignore other cultural factors that could shape their opinions and beliefs. We looked not just at the survey respondents’ race…we also asked them to qualify how they identified their ethnicity.
For example, did the survey respondents view themselves as Black American, African American, or just Black? Also, what can we learn from separating the perspectives of individuals who consider themselves Southeast Asian vs. East Asian? We found that the survey respondents’ comfort in sharing data varied more consistently at the ethnicity level than at the race level. For example, only 3% of survey respondents who identified as Black said they were uncomfortable sharing race or ethnicity-related health care data with the government. This percentage went up to 24% when we looked at our directional sample of survey respondents who identified more as being of African descent. Similarly, a willingness to share race and ethnicity data with a health plan varied widely among survey respondents who identified as Latino/a. Almost 15% of survey respondents who identified as Central or South American were not willing to share race or ethnicity data with a health plan. That percentage drops to 6% when we look at people who identify as Mexican.
There is still a lot to dig into when it comes to ethnicity vs. race. But, based on these early results, we continue to believe there is an opportunity to continue exploring how engrained values, concerns, skepticism, and opportunities differ among cultures. This means that to have genuine conversations that lead to better health outcomes, health care stakeholders should explore ways to be more nuanced and focused. Rather than only looking at the things that make us different, we should try to openly and authentically address the underlying cultural values that people share.
Heather: What can health care stakeholders, particularly health plans and government payers, learn from the survey results?
Brandon: What seemed to cause survey respondents the most discomfort was not knowing how their personal health data would be used (59%), and whether collecting this information was necessary. This was a concern among most survey respondents—even those who said they are comfortable sharing information about their race or ethnicity. Over 65% of survey respondents who were uncomfortable sharing race and ethnicity data said they feared they would be judged unfairly (68%) or discriminated against (67%). There were also concerns about a lack of clear purpose for requesting the data (67%); fear of government tracking (66%); concerns about misdiagnosis (66%); and fears of increased costs (61%) or denial of health coverage (60%). Rampant distrust exists across all institutions—especially in a time of widespread concerns about data privacy. And in the absence of transparent communications, people often fill in the gaps with unfounded concerns about bad intentions and bad behavior. (See Deloitte’s data on Trust trends)
Heather: What I’m hearing is that organizations within the health ecosystem (health plans, government payers, hospitals and health systems, and community organizations) often have not earned the trust of those they serve. That lack of trust can limit their ability to access the information that could help them earn that trust in the first place. While access to more complete race and ethnicity data could help stakeholders identify gaps that contribute to health inequities, some individuals are wary of providing that information. Is that a fair summary?
Brandon: Absolutely. The survey results indicate that there are two ways to make progress. The first strategy is the easiest. Identify individuals who are willing to share their race or ethnicity and find opportunities to collect it. When engaging these audiences, health care stakeholders should shift the way they ask questions. They should also explain how that data is shared across organizations and entities, and how these entities obtain consent. We need to embrace culturally inclusive, value-led communications that showcase a level of common understanding, explicit intent, and community support. We have to figure out how the health care system can talk to individuals like they are people…not data repositories.
The second strategy is a longer-term effort. Health care organizations should try to demonstrate—to individuals, plan members, patients, and communities—that they are working to improve the care quality and health outcomes of individuals who have historically been underserved by our system. Stakeholders should try to showcase the real and tangible investments they’ve made and highlight the improved outcomes that came as a result. They should be transparent about how data is used and not used, and how they are helping to shoulder the burden of effort needed to earn public trust.
What I love most about the survey results is that, while the research started off trying to figure out how to improve race and ethnicity data reporting, we ended up emphasizing many of the same indicators of what human-centric wellness means. That has been the most important lesson: Being inclusive can lead to a better system, and having a better system should start with being inclusive.
Acknowledgements: Becca DePoy, David Rabinowitz
Methodology: Results are drawn from a voluntary convenience sample that was weighted to match the race/ethnicity distribution in the 2020 Census; non-probability sampling strategies may still contain bias after weighting and may not be nationally representative. For instance, individuals who are more concerned about data privacy may be less likely to respond to the survey, and nonusers of the internet and non-English speakers are excluded.
1 Working together to reduce Black maternal mortality, Centers for Disease Control and Prevention, April 6, 2022
2 Eliminating health disparities: Measurement and data needs, National Academy of Sciences, 2004
3 Race/ethnicity reporting and representation in US clinical trials: A cohort study. The Lancet Regional Health-Americas, 2022