“Hear(ing) New Voices”: Peer Reflections from Community-Based Survey Development with Women Living with HIV

Background: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) engaged in an innovative community-based survey development process.

Objectives: We sought to provide 1) an overview of the survey development process, and 2) personal reflections from women living with human immunodeficiency virus (HIV; “peers”) on their own observations of strengths and short-comings of the process and opportunities for improvement.

Methods: Guided by the principles of community-based research (CBR) and meaningful involvement of women living with HIV (WLWH), CHIWOS coordinated a national, multidisciplinary research team, and facilitated a community based survey development process.

Lessons Learned: Four key lessons emerged highlighting the importance of 1) accommodating different preferences for feedback collection, 2) finding the right combination of people and skills, 3) formalizing mentorship, and 4) creating guidelines on survey item reduction and managing expectations from the outset.

Conclusions: Peers discussed the strengths and weaknesses of participatory methodologies in survey development.