Web-based survey data collection with peer support and advocacy organizations: Implications of participatory methods

Abstract

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.