Background: In a safety-net healthcare system serving a large health disparity population, the project team has identified both patient- and investigator-related barriers to increasing patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). Patients lack knowledge of the research process, communication skills, and the confidence to effectively engage with research investigators. Low literacy and limited English proficiency contribute to these barriers among the patients. Research investigators lack knowledge of how to engage patients, methods of PCOR and CER, and the skills to effectively communicate with patient and other non-scientist stakeholders as equal partners.

Proposed Solution: The project team proposes to establish the Patient Stakeholder Committee for Research (PSCR), composed of patients and caregivers, healthcare system personnel, and clinicians and research investigators; develop stakeholder-specific research training curricula; and train a corps of patients and other stakeholders for meaningful engagement.

Objectives:

• Recruit healthcare system patients and caregivers, staff and administrators, and clinicians and investigators to establish PSCR
• Develop stakeholder-specific research training curricula with input from PSCR members
• Develop project quantitative and qualitative evaluation tools with input from PSCR members
• Train patients and other stakeholders in the basics of health research PCOR and CER

Activities:

• Engaging patients and other stakeholders in the establishment of PSCR
• Involving PSCR members in developing research training curricula and project evaluation tools
• Training a large corps of patients with diverse disease conditions
• Training healthcare system personnel, clinicians, and investigators
• Project evaluation

Outcomes/Outputs: Increasing patients’ knowledge of the research process and communication skills, and building confidence will increase their ability to meaningfully contribute to research, including the quantity, quality, and value of the contributions they are able to bring to research discussions. Increasing research investigators’ knowledge of engaging non-scientists in their research, methods of CER, and skills in communicating with non-scientists will lead to an increase in PCOR and CER. The team will produce and deliver quantitative and qualitative assessment tools, a research training curriculum developed for patients with low literacy in English and Spanish, and a curriculum for clinicians and research investigators.

Patient and Stakeholder Engagement Plan: Patients are individuals receiving care in the Harris Health System; other stakeholders include healthcare system staff and administrators, clinicians providing care in the system, and investigators from academic centers affiliated with the healthcare system. Patients and other stakeholders will be engaged extensively throughout the project period, starting with establishment of the PSCR, deciding the mission and governance structure, guiding the development of training curricula, recruitment of other patients and stakeholders for training, and dissemination efforts. The team will have monthly contact while developing training curricula, after which it will hold bi-monthly meetings for PSCR joint stakeholder training.

Project Collaborators: Institutions involved include the University of Texas Health Science Center Houston (UTHealth), Harris Health System, and MD Anderson Cancer Center as a partner in the UTHealth Center for Clinical and Translational Sciences.