The lack of diversity in health research threatens the process of medical science and the future of the healthcare industry. Researchers have long struggled to represent all groups equally in clinical research studies, something the Covid-19 pandemic helped highlight with infection and deaths rates higher for certain racial and socioeconomic classes. For example, one study showed that non-Hispanic Black people account for 34% of Covid-19 deaths, even though they only make up 12% of the population.
While the pandemic highlighted this inequity, it also provided a potential solution. Diseases impact different populations while drugs and other treatments work differently on each person. The pandemic helped accelerate the concept of precision medicine, a data-intensive process to customize care based on a person’s genetic profile. To make precision medicine and other similar initiatives work, researchers need more data on underrepresented populations.
The diversity issue has gotten attention at the national level. In a recent commentary in the journal Cell, Francis Collins, former director of the National Institutes of Health, and Joshua Denny, CEO of NIH’s All of Us Research Program, explained that the lack of diversity exacerbates health disparities and restricts scientific discoveries. The two research experts said 86% of participants in clinical trials are white, while less than 3% of people in published, genome-wide association studies are of African, Hispanic or Latin American ancestries.
Digital technology access on the rise
Underrepresented groups traditionally were thought to have limited access to technology. This made it more difficult for researchers to reach certain segments of the population, but the increase in connectivity has changed this paradigm. In early 2019, 96% of all U.S. adults owned mobile phones, including 98% of Black adults, 92% of high school graduates and 95% of those making less than $30,000 a year, according to the Pew Research Center.
The pandemic undoubtedly accelerated technology adoption as society was forced to go virtual and do almost everything digitally. This includes remote school, work from home and online shopping. Telehealth visits in the U.S. also increased. Almost 24% of healthcare interactions during March through June 2020 were done digitally, compared with only 0.3% for the same period in 2019, according to a study by the Johns Hopkins Bloomberg School of Public Health. During the initial peak of the pandemic, telehealth made up as much as 80% of visits, spiking in areas where Covid-19 outbreaks were high.
Broadband connectivity investment is also on the rise. Congress authorized over $13 billion in new spending for broadband support in December of 2020. As of November 2021, the Infrastructure Investment and Jobs Act provided $65 billion to create and upgrade high-speed networks. The bulk of this funding, $42.5 billion, will go towards unserved and underserved communities via the Broadband Equity, Access, and Deployment Program. This funding is the single largest investment in broadband services in United States history.
For rural communities, the Consolidated Appropriations Act of 2021 allocates $450 million for the ReConnect Program, offering loans, grants and loan-grant combinations to facilitate broadband deployment in rural U.S. communities.
Medical researchers find new solutions
The pandemic helped shifted the perspective of the medical research community. Research and academic centers are usually located in high-cost cities, away from rural populations. These centers traditionally recruited candidates for clinical trials from nearby, assuming they required direct physical contact. When Covid-19 hit, in-clinic, face-to-face meetings were shut down by all health research institutions, making it impossible to recruit participants for health research through traditional in-person meetings.
At the same time, the pandemic made health inequities more undeniable and medical research institutes formed DEI task forces that focused on including diversity in their funding applications and research programs.
As researchers used digital technology to connect with colleagues, family and friends during the lockdown, they also began to see the potential of these technology tools to reach clinical research participants. They used these technologies more and more to connect with and recruit from different communities.
To further increase diversity and inclusion, researchers and technologists should take ensure that:
- Participant diversity in research trials accurately reflects the composition of the target cohort.
- Product design teams include people from various demographics and from diverse races, ethnicities, genders and socioeconomic status.
- The design process includes people for which the treatment or product is intended, along with researchers and technologists.
- Clinical trials and digital technologies are accessible to non-English speakers by including versions in multiple languages and to people with disabilities by complying with Section 508 of the Rehabilitation Act of 1973.
The pandemic accelerated the adoption of digital technologies and changed the conversation around what health research looks like. Diversity, equity and inclusion in medical research is not only good ethics and good science, but also good business.
Expansion in broadband access and digital technologies could bring an explosion in telehealth and related digital tools that will improve healthcare research while leading to more inclusive and improved treatments. The whole world can benefit from the increased availability and adoption of technologies in underrepresented communities.
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