Real Life, Real Time, Peer-Led Data Collection and the OSAC Project

As part of our seven-step cycle in the Organizational Stigma Assessment Cycle project (OSAC), the input of people with lived and living experience (PWLLE) is essential as we learn how people experience stigma at organizations where they receive support and services. We held focus group conversations with service users and staff at pilot partner organizations. Edi Young brought her skills and experience as a peer researcher to lead the focus group discussions with service users, providing opportunities for participants the chance to speak confidently and freely. These conversations allowed us to gain valuable deeper dives into the information gathered through surveys and explore further what is and isn’t working at organizations.

Edi led 5 focus groups with folks from three different communities and reflects on her experiences:

This project walks the talk when it comes to peer leadership, and what an incredible experience to be a part of it. I think the phrase, “and things they are a changing!” applies to this project! Peer leadership working beside service providers is the empowerment of community.

OSAC works with PWLLE and service providers to explore if stigma exists in their programming. This project provides a template with several phases and this template is meant to guide peer leadership and service providers. This project then takes the lead from PWLLE, and shares directions with service providers. Information collected from the focus group phase is guiding the remaining phases that will give programming an active and consistent plan to reduce stigma.

What really makes peer led data collection work is that there is no hierarchy, it is people with shared experiences sharing knowledge, and being active in that knowledge creating safe, respectful, healthy community. Peer leadership is the direction to breaking down the cycle of systemic trauma and the cycle of stigma.

I learned that PWLLE have so much knowledge and want to be guides to better health in community. I learned that being with people where they are at is vital to this project. I heard that stigma can exist and take on different existence anytime and can be changeable. I learned that being vulnerable in sharing can be hard but is the bones of projects like this one. I learned the meaning of humble as I listened to service providers opening their hearts, ears and eyes to explore stigma and how it might exist in programming, and then was overwhelmed at the bravery of all who are participating in the OSAC project. This group are leaders for a new generation of care.


Edi’s work with PWLLE is vital in ensuring that all those who wish to speak are heard. For more information, visit the OSAC project page.