Speaker
Consuelo H. Wilkins, MD, MSCI
Senior Vice President and Senior Associate Dean
for Health Equity and Inclusive Excellence
Professor of Medicine
Vanderbilt University Medical Center
Keywords
Equity, Diversity, Recruitment
Key Points
- Because the system and structures have not been built equitability, we will need to invest more and have more transparency and accountability at every level, from the investigator, funder, publisher and journals. It is everyone’s responsibility.
- There is a need to shift our language. People are “underrepresented” because they have been historically excluded and marginalized. How we categorize race and ethnicity in the U.S. has been historically about oppression. These terms and designations were intended to restrict rights. The racism built into these categories does not go away when we do research.
- There are barriers at the health care professional and researcher level. Researchers push the focus on the population, but do we have the level of cultural humility required, and are we trustworthy enough to be doing this type of research and engaging these populations?
- What does pragmatic mean to minoritized racial and ethnic groups? When we say pragmatic = real world do we understand that health care in the real world is unfair, unjust, racist, discriminatory? We have to recognize the centuries of injustices that have happened in our health systems. The legacies of these inequities and the structural factors live on and are obvious when we look at the health outcomes of populations in our country. How do we adjust, repair, bring in resources to recruit and work with these populations?
- The Trial Innovation Network Recruitment Innovation Center aims to positively impact human health by improving participant enrollment and retention in multi-center clinical trials. Achieving this goal will require sophisticated informatics-based recruitment tools and novel engagement approaches to accelerate recruitment and retention.
- The recruitment plan needs to include study materials that are tailored and accessible to the research population. Study design and approach should support diversity goals. If we are focusing on equity, we need to give participants what they need, such as transit vouchers, childcare considerations, utilizing telehealth, flexible hours, accessible community locations, and compensation
Discussion Themes
-If we accept and acknowledge that race is a social construct, not a category that is tied to biological or genetic differences, then what does that mean when we see clear differences and disparities in health outcomes for these populations? When you live in an environment where you have been minoritized and are experiencing discrimination, it has an impact on your biology. There is plenty of data that shows that. The social circumstances affect health outcomes. It leads to physiological changes, it leads to insulin resistance, changes in your immunology. These social factors can result in changes. That does not mean there are inherent differences or causes because of their race and ethnicity. We have to capture those social and structural factors better so we can stop using race and ethnicity as proxies for the social factors.
-How far along are we in the reframing of looking at the true underlying factors? We have a long way to go; we are talking about data we don’t currently collect. In January we will be expected to collect data on social needs. How will that be collected? Who is asking? Are we piping in community-level factors? The structural issues are really rampant. For example, a question I like to ask is, which of these best describes you, but it is not compatible with the downstream EHR definitions, which are based on CDC terms.
–How should we think about these issues in global studies? First, we lump so many groups into large categories that we call race that we really have very little understanding of the nuanced differences. If we are really looking for population differences then we need a better strategy for identifying culture. It gets down to the social factors, are we capturing these factors that are different within populations. Social factors are often driving health outcomes not other factors.
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Tags
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