Researchers from McGovern Medical School and the School of Public Health are partnering with the Harris Health System to advance patient and stakeholder engagement in research. Dr. Ruby Benjamin-Garner, assistant professor in the Department of Internal Medicine, received the Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to provide research education to patients and other stakeholders within the Harris Health system and to establish a research advisory committee within the system, efforts that will facilitate patient and stakeholder engagement in research.
Patients, caregivers, community members, and health care system staff will be educated on the basics of health research and communicating with research investigators. Clinicians and research investigators will be educated on specifics of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). Dr. Benjamin-Garner, Amanda Sintes-Yallen, Natalia Heredia, and co-investigators, Dr. Maria Fernandez, of the School of Public Health; Dr. Mohammad Zare, of the Department of Family Practice and Community Medicine; and, formerly, Dr. Michael Gardner, of the Harris Health System; have worked over the past year to develop research education curricula for the various stakeholder groups. Developed in English and Spanish, the patient research education curriculum is currently being tested at community health centers and revised prior to wider implementation throughout Harris Health ambulatory health care centers. The aim of the patient research education program is to prepare and enable patients receiving care in a safety-net health care setting to engage with research investigators in the development and conduct of research studies, not as participants, but as collaborators or partners.
Patient education at the community health centers will be conducted in two 3-hour sessions. Patients will be given an overview of the research process, including the types of studies and the basic elements of clinical trials, such as randomization, placebos and blinding. In addition, there are segments on research ethics and effective communication with a focus on confidence building for engaging with professionals.
“We believe this training will boost patients’ confidence to meaningfully contribute to research planning when they sit at the table with research investigators or other health professionals” Dr. Benjamin-Garner said.
A parallel goal of the project is to educate research investigators. To that end, a research education curriculum for investigators is under development, which focuses on engaging with patients and other non-scientist stakeholders and the specifics of CER. The goal of CER, which compares two or more treatments head-to-head, is to provide evidence for decision making among patients, caregivers and health care providers.
In addition to education of stakeholders, another important objective of the project is to provide the infrastructure for PCOR by establishing a research advisory committee within the Harris Health System, the Patient Stakeholder Committee for Research (PSCR). The PSCR is composed of Harris Health System patients, caregivers, and community advocates and other stakeholders, including Harris Health staff, clinicians providing care in the system and research investigators. The PSCR meets once monthly with the primary function to provide input on the development of research education materials and research education processes in the community health centers. “True to PCORI’s mission to engage stakeholders in the entire process, the patient research education curriculum has been reviewed by members of the PSCR, and patient input has been invaluable,” Benjamin-Garner said.
PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. For more information about the Patient Stakeholder Committee for Research (PSCR), contact Dr. Benjamin-Garner at Ruby.A.Benjamin-Garner@uth.tmc.edu .