Web-based Survey Data Collection With Peer Support and Advocacy Organizations: Implications of Participatory Methods

Background: The 2012 National Survey of Peer-Run Organizations is one of the first to survey a nationally representative sample of mental health peer-run organizations, nonprofit venues for support and advocacy which are defined by people with psychiatric histories being in positions of authority and control.

Objectives: This paper describes data collection methods and demonstrates how participatory strategies to involve people with psychiatric histories intersected with Internet research to achieve study aims.

Methods: People with psychiatric histories were involved in designing and implementing a web-based survey to collect data on peer-run organizations' operations and views on national policy. Participatory approaches were used throughout design, data collection analysis, and dissemination.

Conclusions: The extensive involvement of people with psychiatric histories in project design and implementation were important strategies that contributed to this study's success.