Why Diversity in Health Research Really Matters – Today and in the Future

Health equity is foundational to our well-being as a society. And it should remain a priority year in and year out. These are some of the reasons why.

We must reduce inequities, such as maternal mortality, which for Black people is 2.6 times higher than for White people. Nearly 1 in 5 transgender and nonbinary youth attempted suicide in the past year and LGBTQ+ youth of color reported higher rates than their White peers. Hispanic people are 1.3 times more likely than non-Hispanic White people to die from diabetes.  To eliminate inequities, we must more fully understand their root causes. One way to do that is through biomedical research that includes the diversity of ALL Americans.

Historically, many groups of people have been underrepresented in medical research. This includes racial and ethnic minorities, people who live in rural areas, people with low income and educational attainment, people with disabilities, and the LGBTQ+ community. As a result, medical discoveries may be relevant only to a specific group of research participants. If we are to have a more equitable health system, this must change.

For example, it was recently found that a device that fits on the finger and measures oxygen in the blood, a pulse oximeter, is not always accurate for people with darker skin tones. Because this measurement is crucial in deciding on treatment for conditions like asthma, COVID 19 or pneumonia, the severity of sickness in a person with darker skin could be missed. To foster advancement in health equity and establish a fair and just healthcare system, it is imperative that we address these disparities.

That’s why the All of Us Research Program was created. An effort by the National Institutes of Health to improve the future of personalized medicine, All of Us is dedicated to accelerating medical breakthroughs that improve health.

To achieve this goal as a society, we need diversity in research. This means that everyone must be included in research studies. Researchers and others must actively work to change the dynamic that has made many groups understandably distrustful of research by working closely with communities to design and implement culturally competent studies. This means educating those who have not already had the opportunity to learn about the impact they can make as a study participant on the future of health and health care.

All of Us is demonstrating its commitment to enhancing the depth and breadth of medical research in our country by including at least one million people that reflect the diversity of the United States. Since the program launched nationally in 2018, more than 845,000 people have joined. At least 45% of All of Us participants self-identify with a historically underrepresented racial or ethnic group, and more than 80% are part of communities that have been underrepresented in medical research. All of Us is the largest and most diverse health database of its kind. Thanks to this inclusive participation, All of Us currently has more than 14,500 research projects underway. This research has resulted in a multitude of new discoveries – with countless more on the way.

Findings from research using All of Us data have shown that:

• Birthplace influences cancer risk in Hispanic people
• Vision impairment increased mental health conditions during COVID
• Different types of social support can have an impact on depression
• There is a higher prevalence of mental health concerns in LGBTQIA+ participants than in non-LGBTQIA+ participants

This is only the beginning, and it’s only possible thanks to the diversity of the All of Us participant population.

All of Us is also committed to increasing diversity among researchers accessing the participant dataset. As such, in addition to seasoned researchers, we also encourage students and early-career investigators of all backgrounds at academic institutions to access data. Experience demonstrates that diverse research teams are more likely to produce more inclusive, impactful studies.

We invite you to do your part to advance health equity by joining the All of Us Research Program and/or sharing information about it with people who have been historically underrepresented in biomedical research. 

 

Dr. Melissa Clarke is chief health equity officer at Elevance Health

Julia Moore Vogel is senior program director, All of Us Research Program