Background: Although more than half of all people living with human immunodeficiency virus (HIV) in the United States 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. Despite their good intentions, the group has faced obstacles, including problems with connecting stakeholders and building research capacity.
Proposed Solution to the Problem: The project team 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 a region (Coachella Valley, California). Palm Springs, in the Coachella Valley, is a retirement community with a large number of HIV+ gay men over age 50. The proposed activities include three major categories: 1) stakeholder engagement and collective decision making, 2) a workshop on HIV and aging, and 3) training activities.
Objectives: The project’s primary aim is to build the needed foundational relationships and capacity of stakeholders to conduct research on aging and HIV. To do this, the project team will: 1) create a shared governance structure including all stakeholders, 2) disseminate knowledge and develop relationships, 3) identify and explore key topics for future research, and 4) build stakeholder capacity to engage as partners in research.
Activities: The researchers will create a 12-person steering committee to guide all project activities, and a patient partner advisory board. The team will hold a symposium with HIV and aging experts including presentations on cutting-edge research in the field and discussion panels involving multiple stakeholders. To select the priority HIV and aging-related health topics for future comparative effectiveness research (CER), the researchers will conduct focus groups and citizen panels where participants will choose a specific research project to pursue in future grant proposals. The teams will also build capacity by providing targeted research training for stakeholders.
Outcomes and Outputs (projected): The project will identify relevant stakeholders and invite them to serve on the steering committee to guide this project. The researchers will use shared decision-making methods to identify priority research topics for future CER on HIV and aging relevant to patients and other key stakeholders. A workshop on HIV and aging will disseminate the latest cutting-edge research on HIV and aging and provide a space for participant panels to share their lived experience of aging with HIV. The targeted training and co-learning activities will help multiple stakeholder groups learn how to successfully participate in all stages of the research process. The team’s tangible outputs are: IRB approval, MOU, bi-annual newsletters, workshop agenda and proceedings, focus group results, citizen panel educational materials and reports, and training materials.
Patient and Stakeholder Engagement Plan: There are five major primary stakeholder groups for this project: HIV+ patients, their caregivers, their providers, community-based organizations, and academics. A key goal is to bring all of these stakeholders together during multiple stages of the workplan, including the steering committee, the workshop on HIV and aging, the focus groups and citizen panels, and the targeted training and co-learning activities.
Project Collaborators: CVCRI is the main partner organization for this project. Additional collaborative organizations are Borrego Health, Mizell Senior Center, DAP, the LGBT Center, ACRIA, and LKA.
Project Resource: November 2017 Newsletter
Project Resource: May 2018 Newsletter
Project Resource: Focus Group Results
Project Resource: November 2018 Newsletter
Brandon Brown, Karine Dubé, and Jeff Taylor, "Revisiting What to Call People Who Participate in Clinical Research," Ampersand, The PRIMER blog, PRIMER, May 25, 2017, http://blog.primr.org/subjects-vs-participants/