David J. Lee, Ph.D., Professor, and Nicole L. Marrone, Ph.D., CCC-A, Associate Professor, will lead the engagement project at the University of Miami Miller School of Medicine’s Department of Public Health Sciences and the University of Arizona’s Department of Speech, Language, and Hearing Sciences.
The objective of this project is to support, engage, and mobilize Hispanic/Latinx patients as advisors by determining how comparative effectiveness research on hearing interventions can be designed to be patient-centered. This kind of research is used to compare existing health care interventions to determine which will work best to meet a patient’s needs.
“Hearing loss is often an overlooked condition impacting millions of Hispanics/Latinos. Dr. Marrone and I’s [Dr. Lee's] prior research suggests that untreated hearing loss is associated with many adverse physical and psychological outcomes yet hearing loss interventions to help reduce these effects are often underutilized,” Dr. Lee noted.
An interdisciplinary team representing audiology, public health, translation studies, and community health centers will engage patients with hearing loss, clinicians, and community health workers. They will build on their previous engagement of patients in Arizona to a more diverse base of Hispanic/Latinx communities across socio-cultural backgrounds and countries of origin by partnering with stakeholders in Florida.
Brendaly Rodríguez, M.A., C.P.H., from the University of Miami will lead patient engagement. Patty Molina from the Mariposa Community Health Center and Berta Cabrera from the St. John Bosco Clinic will serve as community partners. Aileen Wong, Au.D., Maia Ingram, M.P.H., and Sonia Colina, Ph.D. from the University of Arizona, will be subject matter experts.
With the help of community health workers, the team will engage with patients and health center staff about how they can effectively use patient-centered research to address disparities and evidence gaps. They will define areas of concern, local issues, research priorities, educational needs, and information that is relevant to patient-centered research partnerships.
Additionally, the team will develop a research agenda and sources for dissemination, including summary reports, social media, and bilingual factsheets. To manage age-related hearing loss, researchers will engage with stakeholders in identifying the needs and strengths of the Hispanic/Latinx communities in Arizona and Florida. As a member of the PCORI’s Patient Engagement Advisory Panel, Ms. Rodríguez highlighted, “We envision a future in which patient/participant-driven research will focus on research that improves representativeness and accelerates the adoption of practices to guide clinical and care delivery enterprise. Patients are to be front and center, so research could be done differently.”
Engagement activities will utilize a community-engaged framework to guide future patient-centered research that improves access to hearing health care for diverse populations, specifically Hispanic/Latinx adults. These activities will provide a broader research community with diverse perspectives on the topic that have been lacking in traditional research approaches.
“This award will allow us to explore a condition that is often overlooked when identifying the needs of the underserved and uninsured. As a free clinic, St. John Bosco Clinic looks forward to addressing the disparities in care and access to services that may exist in the area of age-related hearing loss among those we serve,” said Ms. Cabrera.
'Building Research Capacity on Hearing Loss Interventions in Hispanic/Latinx Communities' is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and to disseminate PCORI-funded study results. Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities, and organizations interested in and able to participate in, share, and use patient-centered CER.
According to Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in CER and develop partnerships and infrastructure to disseminate PCORI-funded research results. We look forward to working with the University of Arizona and the University of Miami Miller School of Medicine’s Department of Public Health Sciences throughout the course of their two-year project.”
Dr. Lee and Dr. Marrone’s project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
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