Adoption of E2PLUS tools and resources to promote the development of institutional capacity for patient-centered and community-engaged research at a cancer center

Abstract

Introduction: The Fred Hutch/University of Washington/Seattle Children's Cancer Consortium's (Consortium) Office of Community Outreach & Engagement (OCOE) joined Stanford Medicine and Morehouse School of Medicine in implementing Engage for Equity Plus (E2PLUS), a multi-institutional community of practice to learn and share patient-centered and community-engaged research (P/CEnR) practices. University of New Mexico (UNM) facilitated this collaboration.

Methods: The Consortium formed a Champion Team of 12 people who participated in two virtual workshops facilitated by UNM. Consortium executive leadership (n = 4) participated in interviews, and investigators (n = 4) and community members/patient advocates (n = 8) participated in focus groups to provide institutional context regarding P/CEnR. This is a paper on the process and findings.

Results: Through E2PLUS engagement, the Champion Team identified four strategies to address institutional health inequities: 1) increase participation of underrepresented groups at all levels of institutional leadership and advisory boards; 2) create an Office of Patient Engagement to train and support patients who participate in institutional initiatives and advise research teams; 3) expand community engagement training, resources, and institutional commitment to focus on community-identified social and health needs; and 4) establish an umbrella entity for health equity efforts across the Consortium.

Conclusion: While the Consortium had longstanding community advisory boards and faculty and staff with P/CEnR expertise, it did not have centralized and institutionally supported P/CEnR resources, policies, and infrastructure. By participating in E2PLUS, the Champion Team received technical assistance to leverage qualitative data to influence strategies to guide the development of Consortium health equity infrastructure and capacity for P/CEnR in Washington.

Keywords: Patient and community-engaged research (P/CEnR); academic health center; community-academic partnerships; health equity; patient advocates; qualitative methods.

Figure 1.

Office of Community Outreach & Engagement (OCOE) river of life (Group 1: 1990–2010). Abbreviations in Fig. 1: Center for Community Health Promotion (CCHP); K. Briant (KB); Fred Hutch (FH); community advisory board (CAB); Breast & Cervical Health Program (BCHP); National Cancer Institute (NCI); Community Network Program Center (CNPC).

Figure 2.

Office of Community Outreach & Engagement (OCOE) river of life (Group 2: 2011–2017). Abbreviations in Fig. 2: National Cancer Institute (NCI); community health educators (CHEs).

Figure 3.

Office of Community Outreach & Engagement (OCOE) river of life (Group 3: 2018–present). Abbreviations in Fig. 3: personal protective equipment (PPE); University of Washington (UW); School of Social Work (SSW); School of Public Health (SPH); Northwest Indian College (NWIC); Native American Research Centers for Health (NARCH); Hutchinson Institute for Cancer Outcomes Research (HICOR); Andy Hill Cancer Research Endowment Fund (Andy Hill CARE fund); coronavirus disease 2019 (COVID-19).