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

Laysha Ostrow, PhD, MPP, Darby Penney, MLS, Elizabeth Stuart, PhD, and Phillip J. Leaf, PhD. Progress in Community Health Partnerships: Research, Education, and Action. Volume 11, Issue 1, Spring 2017

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.