Interdisciplinary Collaboration and Community Engagement As Tools for Tackling Inequity: Establishing a Mechanism for Patient Powered Cancer Research at a Safety-Net Hospital

Background and Purpose:

Despite higher rates of cancer-related morbidity and mortality, nationally, people of color are far less likely than their white counterparts to enroll in clinical trials and to receive cutting edge treatments.The factors that contribute to low rates of clinical trial participation among people of color are complex, and deeply rooted in histo-political context, which contributes to distrust and suspicion of the academic research enterprise. Moreover, context influences awareness of clinical trials as well as one’s opportunity to engage.  Because community specific barriers to participation in research are shaped by histo-political, socio-environmental and economic factors that produce and sustain present day inequities, addressing participation barriers begs an understanding of local ecologies, including the life circumstances and experiences of distinct communities. Community engagement can provide researchers with a more nuanced understanding of patient experiences, priorities and community conditions, while simultaneously empowering communities. Co-learning and empowerment that facilitate the diffusion of knowledge, skills, and power among partners while enhancing network connections is a desired outcome associated with community engagement. This can yield novel interventions that are tailored to the values, experiences, practices and worldview of community members.

The purpose of this presentation is to highlight the importance of interdisciplinary collaboration and community engagement in tackling health inequity.  This will be done by describing how the capacity of the Boston University Medical Center Cancer Center to increase patient voice in research and practice was enhanced through a partnership between the Macro Department of the School of Social Work, the Department of Medicine, Section of Hematology-Medical Oncology, and the Center for Community Health Education Research and Service, Inc. Specifically, through illustrative case study, we will describe how employing macro informed engagement strategy serves to increase participation among patients and family members and to catalyze research innovation, increasing both survivor and provider capacity for patient powered research.

Methods:We have established a Cancer Center patient research advisory council.  The PAC was provided with training sessions on health equity, the social determinants of health, care inequities, PCORI and barriers to research participation as presented in the literature.  The PAC then took part in a series of visioning exercises using VMOSA. Once they established their vision and mission they designed and implement an assessment to inform their action plan. The assessment was conducted by PAC members an included in person interviews with cancer patients. Availability and snowball sampling were employed.

Results: The PAC was comprised of cancer survivors and their family members of color.  The conducted in person and telephone interviews with cancer survivors (n=50) to inform their mission: Advocating for patients to be in charge of their cancer care, supported by their doctor.

Conclusions and Implications: Partnering across schools and with community stakeholder considerably enhanced our capacity to increase patient voice in our work of the Cancer Care Center, and have created important opportunities for student, community, researcher and provider capacity building.