Background: In the face of more effective anti-retroviral therapies, the face of HIV is aging. Fifty-one percent of people with HIV are over the age of 50 and 17 percent of new diagnoses occur in older adults. As the community of long-term HIV survivors ages, it is critical that researchers, clinicians, and policy makers understand the unique lived experiences of those navigating the intersection of age-related and HIV-related issues to enact research and policies that matter most.
Proposed Solution to the Problem: The project will develop SHARE: Survivors of HIV Advocating for Research Engagement, a patient stakeholder research advisory group. SHARE comprises members from across the country and will meet virtually. The project team will work with SHARE to build capacity to engage in patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) to influence care for the community of long-term survivors. Stakeholders will disseminate PCOR/CER knowledge in their local communities.
- Create SHARE, a board of research-ready long-term survivors who can advise, inform, and advocate for PCOR/CER
- Identify issues which matter to long-term HIV survivors to inform future community-engaged research and PCOR/CER so that research is done “about us and with us” to improve health and quality of life
- Create collaborative partnerships of long-term HIV survivors, researchers, and clinicians to facilitate shared understanding of PCOR/CER
- Advance knowledge and understanding of PCOR/CER among the long-term HIV survivor community
Activities: Year one will focus on education. SHARE members will build capacity in research to identify what matters most. Year two will be dedicated to meeting with researchers, clinicians, and policy members and SHARE members disseminating information about PCOR/CER in their local communities.
Projected Outcomes and Outputs:
- Develop the SHARE research advisory board
- Improve SHARE members knowledge of research methods including PCOR/CER as well as their capacity to meaningfully engage in research
- Engage SHARE board to identify and compile research priorities for aging with HIV that are meaningful to patient stakeholders
- Make recommendations for modified training materials as well as applicability of results from other PCORI funded studies in HIV to the population of long-term HIV survivors
- Engage SHARE members to lead dissemination efforts in their local communities with improved knowledge of research reported by all who attend dissemination events
Outputs and deliverables: These include a research-ready patient stakeholder board who have completed CIRTification and PCORI research modules, priorities for research in HIV and aging, strategies to increase engagement in among those living with HIV, and lessons learned from dissemination in local communities. The project team will also deliver a sustainability plan, process and outcomes evaluation to share with other stakeholders, results from community needs assessments conducted by SHARE members, and an overall strategic priority.
• Determine a sustainability model for SHARE
• SHARE will be a sustainable and translatable model for incorporating the voice of long-term survivors into PCOR/CER
• Long-term survivors will gain knowledge of how to contribute meaningfully to the development, implementation, and dissemination of PCOR/CER
Patient and Stakeholder Engagement Plan: SHARE members are older adult long-term survivors of HIV. They will meet quarterly and engage in monthly research engagement activities. All members will identify a mechanism of dissemination and will lead dissemination activities in their local communities.
Project Collaborators: CJE SeniorLife in Chicago is the lead organization for this project and GMHC in New York City is the subcontract organization.