Why is increasing Access to Research important to Minority Health?
The COVID-19 pandemic has brought renewed attention to the importance of clinical research, as well as health disparities in the United States. Black and Latinx communities are experiencing disproportionate rates of hospitalization and death from COVID-19, and racial and ethnic minorities have historically been underrepresented in clinical trials.
Diversity in clinical trials is important because medications and other health interventions can affect people differently based on a number of factors including age, genetics and sex. However, just 14% of clinical research participants are from minority racial or ethnic groups. The reasons for this underrepresentation are multifaceted, but we know that accessibility of research opportunities is a significant factor. Joining clinical research studies has traditionally been a complex endeavor and significant commitment, involving spending weeks to months participating on-site academic medical centers. This effectively excludes anyone outside of major metropolitan areas, for instance. Barriers like lack of access to care and institutional bias can also play a role in the underrepresentation of individuals from minority groups. For instance, some research suggests that physicians are not as likely to discuss clinical trials with patients of color.
Our team of scientists, technologists, and patient advocates created Project Baseline with a goal of shifting these trends. By making research easier to navigate and access from anywhere, we hope to engage as broad a population as possible in studies that can ultimately benefit health for all. In light of the pandemic, we've seen in real-time the growing importance of being able to participate in research from home, in a way that fits into participants' lives – not vice versa.
Two of our newest research opportunities – designed for fully at-home participation – actually happened to coincide with the pandemic. The Baseline Skin Study and the Mirai Depression Study both involve using smartphones to capture health information remotely that can then be used by researchers to better understand health. These studies also involve a mix of in-home and virtual visits with health practitioners to oversee participant progress, while adhering to strict COVID-19 protocols.
These studies build on a foundation established by the Baseline Health Study, a longitudinal study that observes thousands of participants and how their health evolves over four years. The Baseline Health Study was designed from the beginning to incorporate data collection in the real world, from a diverse population. The Health Study is representative of the racial and age distribution of the U.S., which allows us to draw scientific conclusions that are relevant to multiple groups.
Due to historical inequities in how research studies were designed and conducted, as researchers, we believe it's important to partner with community members to ensure studies and technologies are inclusive. As part of the Health Study, our study teams engage closely with advisory boards made up of participants and community members who provide input on the study's direction. Similarly, our collaboration with the American Heart Association, Research Goes Red, recently awarded a research grant to Dr. Bertha Hidalgo who is conducting a study on how to engage millennial women of color in heart research through online communities.
More broadly, the research community as a whole is focused on taking steps to increase diversity. In the context of COVID-19, the FDA has provided guidance to biopharmaceutical companies encouraging "enrollment of populations most affected by COVID-19, specifically racial and ethnic minorities." Communities of color are also mobilizing resources to promote vaccine acceptance and education, including the Black Coalition Against COVID-19, an alliance of historically Black universities.
By continuing to make research more accessible, and working to address and overcome historical inequities and barriers, we hope to change the statistics and create a world where we can all live longer, healthier lives. To learn more about our mission, visit projectbaseline.com.