HIV & Aging Research Project - Palm Springs
Although more than half of all people living with HIV in the US are over 50 years old, there is a dearth of data for this population. Palm Springs, in the Coachella Valley, is a retirement community with the highest prevalence of HIV+ gay men over age 50. In 2013, a small group of interested providers, patients, and caregivers residing in the Coachella Valley came together to form the HIV & Aging Research Project - Palm Springs (HARP-PS), formerly known as the Coachella Valley Community Research Initiative or CVCRI), intended to advance research on HIV and aging. Despite their good intentions, multiple problems exist prohibiting their work, including connecting stakeholders and building research capacity.
The University of California, Riverside Center for Healthy Communities (CHC) and HARP-PS are the primary partners for this Patient Centered Outcomes Research Institute, Engagement Award. This project is intended to increase the capacity of our community partners to collaborate in research. We intend to achieve this goal with an approach that equitably involves all partners in the training process for developing, designing, and implementing research questions that are relevant to their community, with the aim to develop a comparative effectiveness study on HIV and aging.
Our primary aim is to build the needed foundational relationships and capacity of stakeholders to conduct research on aging and HIV. To do this we will:
- Create a shared governance structure including all stakeholders;
- Disseminate knowledge and develop relationships;
- Identify and explore key topics for future research;
- Build stakeholder capacity to engage in research.
We will create a 12-person steering committee to guide all project activities, and 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. To select the priority HIV and aging-related health topics for future CER, we will conduct focus groups and citizen panels where participants will choose a specific research to pursue in future grant proposals. We will also build capacity by providing targeted research training for stakeholders.
There are five major primary stakeholder groups for this project; HIV+ patients, their caregivers, their providers, CBOs, and academics. CVCRI is the main partner organization for this project.
|HARC||Borrego Health||Physicians||Family||Basic Researchers|
|The LGBT Center||Desert AIDS Project||Nurse Pracitioners||Friends||
|Mizell Senior Center||Eisenhower Medical Center||Pharmacists||Volunteers||Socio-behavioral researchers|
|HARP-PS||UCR Family Medicine Clinic||Mental Health||Partners||Clinical faculty researchers|
|Jewish Family Services|
Additional collaborative organizations include ACRIA, Lets Kick AIDS Survivor Syndrome, PalmTree Clinical and the Desert Healthcare District.
- Brandon Brown - Academic Project Leader
- Jeff Taylor - Community Project Leader
- Mary Dorsey - Project Coordinator
- Christina Reaves - Academic and Community Collaborator
- Andrew Subica - Academic
Timeline of Activities
To guide activities, we create a steering committee and a patient partner advisory board (PPAB). Next, we will hold a symposium with HIV and aging experts that will consist of presentations on cutting edge research as well as discussion panels on topics such as challenges of HIV treatment, managing multiple aging co-morbidities, and identifying resiliencies that allow people to age well. To select the priority HIV and aging-related health topics for future comparative effectiveness research (CER), we will conduct focus groups to identify major proposed research themes. The team will present a list of these broader themes to the steering committee and PPAB, who will choose three for deeper exploration in citizens’ panels, where participants will collectively choose one specific research topic from each of these three themes for the CVCRI to pursue in future grant proposals. Although we expect all these activities to enhance stakeholder capacity, we will also build capacity by providing targeted research training for stakeholders using discussions co-facilitated by academics and stakeholders to obtain both the scientific and real world perspective and research experience.