Considerations For Engaging Arab Americans In Clinical Research

This article is part two of a three-part series on Arab participation in clinical research. Part one can be read here. Part three is available here.

In the United States, the Arab American community has long been lumped into the category of white, as guided by the U.S. Census Bureau and carried out in clinical research. Yet the community, also recognized as MENA, or people of Middle Eastern and North African descent, embodies distinct differences in culture, language, religion, customs, social norms, and other unique variables. As such, recruitment and enrollment of Arab Americans in clinical trials can have its challenges and requires a culturally sensitive and tailored approach.

Speaking The Language Of Arab Americans

The use of culturally appropriate and language-specific communication materials to reach the Arab American community can be crucial. Translating study information, consent forms, and recruitment materials into Arabic, which is the prevalent spoken language in the MENA region and by people in the Arab community, will aid in patients’ understanding. Another consideration is to use bilingual staff or interpreters during patient interactions and consenting activities.

However, it’s not always about the language itself but about the way in which information is communicated. Engaging trusted leaders, organizations, and influencers within the Arab American community through culturally competent outreach programs will help disseminate information about clinical trials. Collaborating with grassroots organizations that cater to this community, such as Arab community centers, mosques, cultural associations, and Arab-speaking healthcare providers, can also help raise awareness and build trust. For instance, a large contingent of Arab Americans lives in the Houston area, and so partnering with the American Lebanese Cultural Center, the Syrian American Club, the Egyptian American Society of Houston, and The Palestinian American Cultural Center might provide ample opportunities to offer awareness campaigns to Arab Americans in the metropolitan area. This effort has not been undertaken and might also present a gateway to promote education and even garner interest in joining the clinical research workforce.

Within those community conversations, stakeholders need to address misconceptions and provide accurate information about clinical trials in Arabic. Addressing the concerns faced by Arab Americans and other minority groups related to privacy, confidentiality, risks, and benefits should be factored in. Providing tailored educational materials to address religious or cultural beliefs that may impact perceptions of clinical research may prove beneficial.

Accommodating Cultural Differences With A Personalized Approach

Building trust and rapport with potential participants by providing a welcoming and inclusive environment that respects cultural sensitivities and offering personalized support will help enrollment efforts. Considering individual preferences for study participation, such as accommodating prayer times, dietary restrictions, and gender preferences for healthcare providers, is a crucial factor in ensuring the success of clinical trials involving Arab patients.

For Arabs practicing Islam, attending Friday prayers and following dietary habits that avoid pork are customary and of utmost importance. When sites invite potential participants for recruitment events, it is essential to respect these cultural practices. In addition, it is important to respect cultural norms related to physical contact, such as handshaking, as certain individuals, especially of the opposite gender, may be uncomfortable with it. Along those lines, women from the Arab American community often express a preference for being treated or attended to by healthcare providers of the same sex. These considerations play a significant role in creating a respectful and comfortable healthcare environment for Arab American patients.

The impact of transportation, childcare, work schedules, and other logistical challenges may also affect participation, enrollment, and retention rates. Incorporating transportation assistance and flexible scheduling options to accommodate participants' needs, particularly during Friday prayers and the holy month of Ramadan in Islam, is essential for the success of a clinical study involving this cohort. Clear communication about these considerations should be included in the study protocol and discussed early in the design phase with sponsors and CROs. Acknowledging the significance of Friday prayers and Ramadan observance within the community is critical, as certain visits and medical procedures, such as blood workups, may need to be avoided during this period. Crucial to recognizing these needs is including community ambassadors in the early study design phase.

Recognizing family dynamics within the Arab American community is also a key element in building a trusted relationship with study participants. In Arab American communities, the family structure is typically hierarchical and tightly knit. The concept of family extends beyond the immediate nuclear family to include extended family members, such as grandparents, aunts, uncles, and cousins. The family is considered the foundation of Arab society, and its well-being is highly valued. The hierarchical structure within Arab American families is typically patriarchal, with the eldest male, often the father or grandfather, holding significant authority and decision-making power. Respect for elders is an essential cultural value, and their opinions and advice carry great weight in family matters.

Expectedly, family members often participate in making health-related decisions for an individual, especially in cases of serious illnesses or medical treatments. Engaging the family in healthcare decisions can enhance patient compliance with treatment plans and improve overall well-being. Further, facilitating peer-to-peer support and connections between potential participants and individuals from the same community who have participated in clinical trials can help alleviate concerns, provide firsthand experiences, and provide an opportunity for mentorship. When researchers and stakeholders engage family members in discussions and decisions, successful study enrollment and retention will be the end result. Concerns or fears that family members may have about the risks or implications of participation need to be discussed with potential and existing patients.

Researchers need to recognize the value of long-term engagement and building long-term relationships with the Arab community. Engaging participants beyond the study period by providing updates on research findings and involving them in the dissemination of results will foster ongoing trust and partnership.

About The Author:

Dr. Hadi Danawi, Ph.D. is a professor in global public health and epidemiology. He is actively engaged in industrywide projects relating to remote consulting, higher education (master and doctoral programs in public health/healthcare administration), and clinical trial design and management. Dr. Danawi created the Arab Board for Clinical Research to promote diversity and inclusion of Arabs and Arab Americans in clinical research, the use of DCTs, and education and staffing of Arabs and Arab Americans in clinical research.

Dr. Danawi has expertise in pharmaco-epidemiology and drug safety/pharmacovigilance with big pharma, including outcomes research and RWE. Dr. Danawi is passionate about creating positive social change in underserved communities in Africa and the Middle East and so established a not-for-profit organization with chapters in Lebanon and Ghana to provide technical assistance for project implementation, curriculum development, and training of local associates for self-reliance in diseases prevention, health services, and family and community health initiatives.