Black Bostonians are less likely than their white counterparts to enroll in clinical trials and to receive cutting edge treatments. Moreover, despite the incredible amount of research and health care resources available in Boston, grave inequities in health outcomes persist. Currently, patient voice in research is faint at best and there is not a mechanism within the Cancer Center by which patients can connect with research, and more importantly inform PCOR activities. Leveraging our unique position as a safety net hospital in a city where the vast majority of residents are people of color identifying as Black and Latino, the proposed training and development award is specifically designed to build institutional capacity for patient powered research.
Through community engagement, we seek to catalyze research innovation and increase both survivor and provider knowledge establishing a Cancer Center patient research advisory council (PAC). Once up and running the PAC will provide ongoing training and engagement activities designed to dismantle the wall between researcher and researched, in an effort to increase community engagement in cancer research. The PAC will work with cancer center researchers to build a patient powered research agenda whereby cancer survivors and their family members will collectively identify research priority areas, contributing to the overall vision of the cancer center. The specific aims of the proposed engagement award are threefold.
- Specific Aim #1: To establish a patient advisory council (PAC).
- Specific Aim #2: To engage the PAC in critical dialogs in order to develop a strategic vision for PCOR based on patient priorities, using elements of the charrette process.
- Specific Aim #3: Based on the results of aim #2, and in collaboration with the PAC we will a) develop and implement PCOR activities to support the strategic vision of the PAC, b) conduct both a process and outcome evaluation of the PAC, planning process and activities, and c) disseminate findings locally and nationally.
Long-term outcomes we anticipate seeing are threefold. First, we foresee an increased interest in patient powered research and community engagement in the cancer center and within the broader hospital community. Second, establishing a PAC that is active will increase the overall capacity of the institution for PCOR. Third, we anticipate this newly established resource will alleviate barriers to PCOR and patient engagement, by increasing both patient and research knowledge and creating connections between these two stakeholder groups. This we anticipate will increase the number of researchers engaged in PCOR programming.
Key project deliverables will include: Patient leadership training curriculum; A description of the process used to develop the PAC strategic plan and vision for patient powered research the plan itself; and a comprehensive PCOR tool kit that includes: tips for establishing and training a PAC, collaborative strategic planning for a PAC vision, tools for engaging patients and researchers, and assessing institutional readiness for PCOR. This work is being directed by an interdisciplinary community-academic partnership presenting three partner organizations: Boston University Medical Center, the Boston University School of Social Work and the Center for Community Health Education Research and Service, Inc.