The need for greater diversity and inclusion in mental health research has been apparent for decades. Whether intentionally or unintentionally, Black, Indigenous, and other people of color (BIPOC) have been routinely excluded from the mental health research process. This is in part why therapeutic treatments available today do not work effectively for all members of the population.
The exclusion and under-representation of minorities is especially apparent at the clinical stage of research. According to the FDA Drug Trials Snapshot Summary Report from 2015 to 2019, the main demographic for participation in all clinical trials was white females who are over the age of 65. For psychiatry and mental health clinical trials the main demographic for participants was also white. Language differences, cultural insensitivity, health literacy, transportation, and cost, compounded by mistrust of the health care system due to historic abuses, such as the Tuskegee syphilis study, and persistent inequities in the modern healthcare system are but some of the barriers preventing BIPOC individuals from seeking mental health care and participating in research.
Psychiatry and mental health clinical trials face additional barriers to participation due to stigma associated with mental health challenges and cultural barriers to treatment. The inclusion of participants from racial and ethnic minority communities in mental health clinical trials can be aided by addressing these barriers.
Philanthropy can play a role in addressing these long-standing challenges by engaging with BIPOC communities and researchers to gain firsthand perspective, establish trust and bring research opportunities to BIPOC communities. A few potentials for how include:
- Philanthropists can collaborate with community health centers to help bring the infrastructure and technology needed to ensure clinical trials are more accessible and representative. This can be done by working within the local community and with trusted community healthcare providers. A potential example for this is St. David's Foundation's work with clinics to create community health hubs that focus on health equity in Texas. Using this kind of approach, philanthropists and researchers can establish clinical trial locations at community health centers to lower the burden of transportation and cost on the participant. It would also aid in the establishment of culturally sensitive environments where researchers can engage with participants in their preferred language. The application of new technology can also provide new engagement methods such as telehealth and wearable devices for remote participation and privacy for mental health clinical trials.
- Philanthropists can also empower community leaders and experts to develop health education materials and programs. These can be delivered through telehealth or within the community health center to provide education on clinical trials and mental health to establish trust, increase health literacy, and lower stigma on participating in mental health trials. Similar work has been done by the Child Mind Institute, which provides online resources for children’s mental health and aids families in identifying mental health care and research.
- Lastly, philanthropists can work with researchers and academic medical centers to establish mental health clinical trial networks and grants that prioritize inclusive research. A clinical trial network is a collaborative group of clinical researchers and administrative support who come together to advance clinical research through shared resources and expertise. Examples of philanthropy in clinical trial networks include the Reeve Foundation North American Clinical Trials Network and Cystic Fibrosis Therapeutics Development Network. A mental health clinical trial network could be used to support inclusive research and help provide the resources (I.e., transportation, language training) that are needed to lower the barriers to participation. A clinical trial network can also support the participants by establishing a sense of community, providing mental health education, making data transparent, and establishing a system of support. The use of philanthropic capital and expertise has the potential to help increase clinical trial participation and inclusion for racial and ethnic minorities.
These are but a few suggestions to improve BIPOC inclusion and participation in mental health research and clinical trials. Getting there will not be easy, but philanthropy can play a role in driving the conversation for research and collaborative action between all stakeholders to ensure that racial and ethnic minorities are being included in mental health research. This effort will be vital to ensuring a future where mental health treatments are safe and effective for all individuals.