Partnering for Impact: Co-Designing Strategies to Strengthen HIV Care Engagement

People living with HIV (PLHIV) face multiple, intersecting barriers to staying engaged in care including housing precarity, substance use stigma, racism, and colonial violence. Yet, engagement in HIV care continues to be defined primarily by biomedical indicators such as clinic attendance. This narrow definition overlooks the ways PLHIV sustain care within social and structural contexts and limits understanding of the broader inequities that shape engagement, disengagement, and re-engagement in care. 

This project broadens the definition of HIV care engagement to include client-defined meaningful connections such as participation in harm reduction programs,peer supports, and food services as legitimate forms of care that reflect the lived realities of PLHIV. Grounded in intersectionality, it acknowledges that PLHIV experience multiple, overlapping barriers to care engagement and examines how overlapping systems of oppression influence care participation with the goal of co-designing strategies that make HIV care more equitable and responsive.

A collaboration between Casey House, Canada’s stand-alone HIV hospital, the Canada Excellence Research Chair in Health Equity and Community Wellbeing (CERC-HECW) at Toronto Metropolitan University, and the University of Victoria, the project builds on an established Memorandum of Understanding that sets out the co-leadership, governance, and data stewardship structures that underpin this partnership. Within this framework, it brings together Casey House’s leadership in HIV care and practice-based data through the Multidimensional Risk Assessment Tool (MRAT) with the academic team’s expertise in intersectionality-informed, community-engaged research.

Research Questions

1. What are the demographic, social, and structural characteristics of Casey House clients, and how do these relate to stages of engagement along the HIV care continuum?

2. How do clients from diverse, intersectional backgrounds experience engagement, disengagement, and re-engagement across different stages of the HIV care continuum?

3. Which intersectional identities and MRAT domains are associated with patterns of engagement, disengagement, and re-engagement across the HIV care continuum?

Project phases

Guided by Canada’s Strategy for Patient-Oriented Research (SPOR) and the Quintuple Aim Framework, the project is co-produced with PLHIV from design through to dissemination and applies intersectionality as a theoretical and methodological orientation across all stages of the research lifecycle. In alignment with SPOR principles, activities include:

·      Phase 1: Co-design the research

Establish and train a Community Leadership Group (CLG) composed of PLHIV who will co-set agendas, co-facilitate focus groups, co-interpret findings, and co-develop knowledge mobilization outputs.

·      Phase 2: Clinical data analysis

Conduct secondary analysis of MRAT data to explore how demographic, social, and structural determinants interact to influence engagement patterns

·      Phase 3: Arts-based interviews

Holding arts-based interviews with clients to contextualize MRAT findings and identify facilitators and barriers to engagement. 

·      Phase 4: Strategy development

Co-produce practical strategies and tools such as client-facing guides and provider toolkits to enhance equity in HIV care.

Goals and Implications

By centring the voices of PLHIV and integrating lived expertise with practice-based evidence, the project aims to advance the operationalization of intersectionality in health service research and contribute to systemic transformation toward more equitable HIV care across Canada.