It’s Not a One Size Fits All Approach: Best Practices for Engaging Minorities with SCD in Health Research
World Sickle Cell Awareness Day highlighted the importance of respectfully and meaningfully engaging patients in health research.
Sickle cell disease (SCD) is the most common inherited genetic disorder in the US and disproportionately affects African Americans. Similar to other chronic illnesses that predominantly affect minorities, recruitment and retention of African Americans with SCD is especially difficult due to mistrust and other cultural and socioeconomic barriers that impede interest and engagement.
Here are best practices for researchers seeking to recruit and engage African Americans with SCD in health research:
- Input from the sickle cell community is critical. Best practice strategies to engage minority and underrepresented populations in research should begin with recognition that this community and their contributions play a critical role in the scientific process. This recognition also means allowing community members to help steer the direction of the research.
- One size doesn’t fit all. Engaging minority populations is not the same as engaging minorities with a specific disease such as SCD (a rare, hidden disease). One successful approach to establishing trust, rapport, and engagement with the sickle cell community is partnering with a disease-specific, community-based organization. For my research, I have partnered with the Sickle Cell Foundation of Tennessee. This organization’s advocacy for health research and enhancing the of care sickle cell patients led to an organic and mutually beneficial partnership.
- Foster positive community-researcher relationships. Community-researcher relationships may fall along a broad continuum, ranging from distant, detached and impersonal to close, collaborative and friendly. For populations like those with SCD, where stigma and barriers to care are prevalent, researchers’ commitment to the community and development of interpersonal relationships is key. Researchers can show their commitment to the community by allowing time to build the relationship. It is also important for researchers to disseminate results to the community toward project completion. The dissemination of results acknowledges the efforts of the community and shows community members that their contribution to research is valuable.
- What works for you may work for others. Researchers are continually seeking effective strategies for engaging minority and underrepresented communities in health research. Successful strategies to engage minorities with SCD may serve as a template for engaging other hard to reach or underrepresented populations.