Unidos Hablemos de: Engaging Hispanic Patients in Patient Centered Outcomes Research and Clinical Effectiveness Research (PCOR/CER)

ABSTRACT

Rationale Historically, Hispanics are underrepresented in research which reduces the generalizability of research findings. Patient engagement in research can support more relevant research through better alignment with patients' and clinicians' real-world needs and concerns. A virtual conference series for the Hispanic community was held to gain insights to better engage Hispanic patients in research. Methods: A Patient Advisory Group (PAG) comprised of Hispanic patients diagnosed with COVID-19 and/or asthma and a Faith-based leader developed a six-month virtual series (objectives, platform, theme, agendas, and identification of presenters), pre-and-post knowledge surveys, polling questions, and session evaluations. Based on the PAG feedback, messaging, promotion and handouts were offered in English and Spanish. Results: Between October 2021- March 2022, 2200 people attended over the 6 virtual sessions. Attendees identifying as Hispanic patients or caregivers increased by 6.7%, and 19% requested content in Spanish. Overall knowledge was gained for sessions 2-6. 66.4% of attendees agreed they would be willing to be a research subject in an asthma study, while 15.6% did not agree and 18% would if their doctor thought it was a good idea. When asked about willingness to be a patient partner/advisor for an asthma study, 77.6% agreed, while only 3.2% did not agree and the remaining 20% were either unsure or participation would depend on whether their doctor thought it was a good idea. Conclusions: This bilingual virtual series engaged patients/caregivers to learn about COVID-19 and asthma, and tools used to participate in research with the goal to increase representation of Hispanics in research.