Building partnerships with African, Caribbean, and Black communities to address health inequities related to COVID-19 in transplantation

Since the beginning of COVID-19, transplant patients have had a higher risk of hospitalization, intensive care admissions, and death than the general population. Although the pandemic has affected all Canadians, the health risks, burdens, experiences, and outcomes were not equal for everyone. African, Caribbean, and Black (ACB) communities have been disproportionately affected by COVID-19, with higher rates of diagnosis, hospitalization, and deaths than other racial groups, yet remain underrepresented in COVID-19-focused research, particularly in transplantation. We do not understand how COVID-19 continues impacting ACB transplant patients, families, and caregivers. To achieve a real-time understanding, we require continuous engagement and relationship building with community partners, persons with lived experience, and trusted health organizations to co-develop culturally informed strategies to help improve the health and wellness of the ACB transplant community. With a national, multi-disciplinary team, The Canadian Donation and Transplantation Research Program (CDTRP) has linked 12 Canadian transplant programs and is launching a prospective study of over 2500 transplant patients and their caregivers entitled "Addressing critical issues and therapeutics emerging in transplantation for COVID-19" (TREAT-COVID). The study captures outcomes from medical chart reviews, Patient-Reported Outcome Measures, and economic questionnaires to enable our research team to answer patient and family questions on (1) therapeutic effectiveness and safety; (2) mental health, long-term well-being, and family impact; and (3) economic burden on the health care system and families. Our community engagement plans are rooted in the principles of co-development and leadership with ACB transplant patients and families so they can steer research priorities, participate in research, and inform communication strategies to benefit from research results.