Taking a “Care Pathway/Whole Systems” Approach to Equality Diversity Inclusion (EDI) in Organ Donation and Transplantation in Relation to the Needs of “Ethnic/Racial/Migrant” Minority Communities: A Statement and a Call for Action

Abstract

International evidence shows variation in organ donation and transplantation (ODT) based upon a range of patient characteristics. What is less well understood is the impact of patient “ethnicity/race/immigration background,” as these terms are defined and intended differently across countries. We also know that these characteristics do not operate in isolation but intersect with a range of factors. In this paper, we propose a framework that seeks to clarify the definition of the key terms “ethnicity/race/migrant” and to review how these communities are operationalized across European studies about inequities in ODT. Further, patients and the public wish to see Equality Diversity Inclusion (EDI) approaches in their everyday lives, not just in relation to ODT. We propose a ‘care pathway/whole-systems’ approach to ODT encompassing culturally competent public health interventions for a) the prevention and management of chronic diseases, b) improvements in public engagement for the promotion of the culture of ODT and enhancements in end-of-life care, through to c) enhanced likelihood of successful transplant among migrant/ethnic minority communities. Our framework recognizes that if we truly wish to take an EDI approach to ODT, we need to adopt a more social, human and holistic approach to examining questions around patient ethnicity.

Inequities in Organ Donation and Transplantation Among Immigrant Populations in Italy: A Narrative Review of Evidence, Gaps in Research and Potential Areas for Intervention

“…Italian findings might not apply to immigrant populations residing in countries with a different healthcare and social security system, with longer standing immigration history, or to second- or third-generation immigrants (i.e., subjects who were native-born of foreign-born families). As noted in prior reports, consensus is lacking about the categorization of these populations in Europe [ 1 , 45 ]. This applies also to the studies included in our review.…”

“…As recommended by prior reports [ 45 ], both the features related to “ethnicity” (including country of origin or descent) and “immigrant status” (or family history of immigration) should be considered for the purposes of studies in relation to ODT [ 45 ]. For instance, the European Public Health Association contends that, although immigration includes also elements of ethnicity, “visible minorities” are likely to experience more significant inequities relative to their White referents, similar to immigrants [ 46 ].…”

“…Ethnicity: "the social group a person belongs to, and either identifies with or is identified with by others, as a result of a mix of cultural and other factors including language, diet, religion, ancestry, and physical features" that are shared by individuals in the same group [44]. As recommended by prior reports [45], both the features related to "ethnicity" (including country of origin or descent) and "immigrant status" (or family history of immigration) should be considered for the purposes of studies in relation to ODT [45]. For instance, the European Public Health Association contends that, although immigration includes also elements of ethnicity, "visible minorities" are likely to experience more significant inequities relative to their White referents, similar to immigrants [46].…”

Critical pathway for deceased donors: An analysis in three regions of Colombia

“…The increasing prevalence of end-stage organ diseases suitable for transplantation is a pressing public health concern 22 . Despite the WHO's call for self-sufficiency policies, achieving this remains challenging due to insufficient donor characteristics information.…”

Refusal Rates to Organ Donation in Intensive Care Units Among Immigrant Populations in Italy

“…We contend that it is an ethical duty and responsibility to foster shared decision-making (i.e., “a relational process … allowing decisions to develop over time by jointly respecting clinical indications and individual … subjective considerations, values, needs, preferences, life circumstances and goals”) [ 8 ] to enable free and informed choices surrounding organ donation among these populations. Consideration of the informative, cultural, and psychosocial needs of these communities in relation to deceased organ donation and end-of-life care; understanding of the difficulties and educational gaps among HCPs and of the deficiencies at the organizational level allowing to communicate in a culturally sensitive fashion with bereaved family members in ICUs, and the promotion of an ongoing dialogue among all stakeholders (including representatives from minority, migrant and faith communities) are critical for the subsequent development of interventions directed towards these populations [ 9 , 10 ]. The CNT has recently initiated a project named Fostering And Improving equity, participation and inclusion in Transplantation Healthcare (FAITH) to address the existing gaps in the entire organ donation and transplantation pathway (i.e., promotion of the culture of organ donation and transplantation among the public/communities, relational processes in ICUs, and relational/educational processes at transplant centers with transplant recipients and, when this applies, their potential living donors) to enable the implementation of shared decision-making across the entire process [ 9 ].…”