What to Consider in Addressing Clinical Trial Health Disparities
The COVID pandemic has shone a stark spotlight on health disparities and a number of recent conferences convened diversity experts to discuss the factors at play that are often unaddressed or unacknowledged.
Three key themes emerged for us from these events: The Risks of Non-Diverse Research, the Role of Relationships and Trust, and the Environment as a Social Determinant of Health. Highlights and learnings include:
Risks of Non-Diverse Research
- Lack of diversity in clinical trials means outcomes are not reflective of the entire population a drug is intended to treat – genetics, race, ethnicity, ancestry and geographic origin can play a role in how an individual reacts to a drug.
- Getting to better outcomes through diverse research is two-fold: diversity of researchers and diversity of participants and both need to be addressed in order for research to be truly representative
- Diversity starts inside companies and CROs with commitments to shift research to more diverse trial locations – moving out of the major academic medical centers to community-based sites where diverse populations reside
Relationships and Trust
- Trust, the foundation of any relationship, is forged over time. It’s essential to consult and partner with those most trusted by a community to deliver timely, important, and accurate health information.
- Clinical trials happen locally so engaging trusted messengers, such as faith-based institutions or community leaders, who can build a bridge to the community in the context of their day-to-day lives is key.
- Asking patients to participate in a clinical trial should never be the first interaction Establish relationships for the long term first by listening and then by learning how to provide meaningful support.
- Patients feel more comfortable with people who understand and can walk in their shoes because of their cultural, language, geographic, gender or racial commonalities or who are trained in cultural sensitivity and respect and understand patients’ beliefs. Many patients do not fully trust pharmaceutical companies and need to understand and weigh their options with trusted sources before agreeing to participate in a clinical trial
Environment
- In forging ties with a community research center, evaluate the social determinants of health impacting the community.
- Ask about the community’s priorities and values – health may not be top of mind.
- Geography, social, physical environment, economics all play a role in day-to-day decisions of patients. These factors can sway participation in clinical trials and creative solutions – gas payments, mobile tests and concierge services – are an important consideration in trial design
- Consider the beliefs and values of the community and include the community’s diverse voices in the development of clinical trial protocols. They will willingly share their perspectives when given the chance to do so.