A research team at the University of California, Riverside, has been approved for a $250,000, two-year award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support bringing together stakeholders in the Coachella Valley around the topic of HIV and aging.
Brandon BrownCredit: UC Riverside
Brandon Brown, an assistant professor in the department of social medicine and population health in the School of Medicine, will lead the engagement project at UC Riverside. Specifically, the project will focus on building the needed foundational relationships and capacity of stakeholders to conduct research on aging and HIV.
“We will create a shared governance structure including all stakeholders, disseminate knowledge and develop relationships, identify and explore key topics for future research, and build stakeholder capacity to engage in research,” said Brown, a member of the UC Riverside Center for Healthy Communities.
Five major primary stakeholder groups have been already identified for the project: HIV+ patients, their caregivers, their providers, community-based organizations and academics. The team led by Brown will start the project by creating a 12-person steering committee to guide all future activities, as well as a patient partner advisory board.
“We will hold a symposium with HIV and aging experts, including presentations on cutting-edge research in the field and discussion panels involving multiple stakeholders including patients, caregivers and providers to give their perspective on both living with and treating people HIV,” he said. “To select the priority HIV and aging-related health topics for future research, we will conduct focus groups and citizen panels where participants will choose a specific project to pursue in future grant proposals. We will also build capacity by providing targeted research training for all stakeholders.”
Brown explained that, although more than half of all people living with HIV in the U.S. are over 50 years old, there is a dearth of data for this population. In 2013, a small group of interested providers, patients and caregivers residing in the Coachella Valley came together to form the Coachella Valley Community Research Initiative (CVCRI), intended to advance research on HIV and aging. Yet, multiple problems persist to this day, including connecting stakeholders and building research capacity.
“Palm Springs, in the Coachella Valley, is a retirement community with the highest prevalence of HIV+ gay men over age 50,” Brown said. “We will build the foundational relationships and capacity of stakeholders who have high motivation and opportunity but little research experience to conduct research on HIV and aging in the region. Activities include stakeholder engagement and collective decision-making; a workshop on HIV and aging that will disseminate the latest research on this topic; and training activities to help stakeholder groups learn how to successfully participate in all stages of the research project.”
The project, titled “The Coachella Valley Community Research Initiative for Healthy Aging with HIV,” is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other health care stakeholders who have the knowledge, skills and partnerships to participate in and advance patient-centered outcomes research and patient-centered comparative effectiveness research.
“This project was selected for PCORI Engagement Award funding for its commitment to improving the capacity for patients and other stakeholders to engage in patient-centered research and its potential to increase the usefulness and trustworthiness of the research PCORI funds,” said Jean Slutsky, PCORI’s chief engagement and dissemination officer. “We look forward to following the project’s progress and working with Dr. Brown to share the results.”
The project led by Brown 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/funding-opportunities/programmatic-funding/eugene-washington-pcori-engagement-awards.
CVCRI is the main partner organization for the project led by Brown and his community partner, Jeff Taylor. Additional collaborative organizations include Borrego Health, Desert AIDS Project, The Center, ACRIA, Lets Kick AIDS Survivor Syndrome and Mizell Senior Center.
“As a grassroots nonprofit community research startup, we couldn’t do this without our collaborators at the UCR School of Medicine,” Taylor said. “Having both clinical and socio-behavioral researchers to collaborate with, and, most important, the invaluable help from the Center for Healthy Communities in successfully competing for and administering this capacity building grant, will allow us to do the community-based research on aging with HIV that our community desperately needs to improve the clinical care and quality of life of long-term HIV survivors now growing older.”
PCORI is an independent, non-profit 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. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.
