Patient engagement is an opportunity to promote diversity and inclusion in PCTs and, more broadly, contribute to achieving health equity. In the Healthy People 2030 framework, the US Department of Health and Human Services describes health equity as “the attainment of the highest level of health for all people. Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities” (US Department of Health and Human Services 2020).

Patient engagement is central to addressing health inequities and planning for diverse representation in PCTs. The medical history and experiences of potential patient partners should be considered in how they promote patient representation. Especially important is the engagement of individuals from groups that are historically underrepresented in research, such as racial and ethnic minoritized groups. Patient partners have insights on community perspectives and experiences that can be helpful in developing strategies to promote trust among these communities. While recruiting truly representative patient partners can be a challenge, researchers can use existing resources to promote a diverse and representative partner group. For example, the head of the patient resource center at the researcher’s institution may be able to identify patients who are already serving on similar committees or engaging in other research activities. These individuals may be more likely to engage in other research and represent diverse viewpoints (Ellis et al 2017).

Research teams should be educated on the history of exploitation of minoritized communities in research that has led to widespread mistrust. This mistrust can be a barrier to engaging patient partners from minoritized communities. “Research teams must intentionally, actively, and continuously work to create inclusive environments by developing norms and practices that support stakeholders’ full and authentic engagement” (PCORI 2021).

A long-standing history of exploitation by the research community is also a significant barrier to research participation. For example, mistrust of academic and research institutions and investigators was found to be the most significant attitudinal barrier to research participation reported by African Americans (Scharff et al 2010). Researchers found that long-term partnership and improving access to quality care were the most effective strategies to improve research participation. Specific activities included the creation of community advisory boards, delivering culturally targeted education programs, and partnering with community-based organizations (Scharff et al 2010).

Understanding the context and implications of historic mistrust is a key concept in the Community-based Participatory Research (CBPR) Conceptual Model (Belone et al 2014). More information on how to promote diversity and health equity through engagement can be found in the "Planning for Diversity and Engaging Diverse Participants" chapter.