Stakeholder Engagement through Participatory Action Research at iSPARC
KeywordsImplementation Science and Practice Advances Research Center (iSPARC)
Civic and Community Engagement
Community Health and Preventive Medicine
Health Services Research
Mental and Social Health
Psychiatry and Psychology
Translational Medical Research
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AbstractThe Implementation Science & Practice-based Advances Research Center (iSPARC) is a new DMH-funded collaborative effort between the former Systems and Psychosocial Advances Research Center, Quantitative Health Sciences and Boston University's Center for Psychiatric Rehabilitation. With 52 core and affiliate investigators, iSPARC features five interacting programs: Stakeholder Engagement, Public Mental Health and Implementation Research, Technical Assistance and Consultation, Workforce Development, and External Funding. The mission of the Stakeholder Engagement Program is to lead the mental health research community and beyond in working in partnership with individuals with lived mental health experience, their families, and the agencies that serve them. This program intersects with several of iSPARC's activities. It includes three active advisory groups with more than 20 members representing youth, individuals with lived mental health experience, and family members. These advisory groups adopt a participatory action research (PAR) approach and seek to engage community stakeholders at every stage of research, from development through enrollment and dissemination. Starting in 2018, the Stakeholder Program will seek to increase engagement and diversity through several additional initiatives. A new community provider advisory group is currently being developed and the Program is working to assess and assure diversity across all advisory groups. The Program will use a structured assessment tool and continuous quality improvement approach to measure and facilitate participatory action research across all iSPARC's projects. The Program will develop and disseminate products to assist other organizations in initiating and maintaining stakeholder engagement. The proposed poster will summarize these activities and include examples of products created.
Permanent Link to this Itemhttp://hdl.handle.net/20.500.14038/26744
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"Our lab is the community": Defining essential supporting infrastructure in engagement researchNease, Donald E. Jr.; Burton, Dee; Cutrona, Sarah L.; Edmundson, Lauren; Krist, Alex H.; Laws, Michael Barton; Tamez, Montelle (2018-08-01)Introduction: Effective patient engagement is central to patient-centered outcomes research. A well-designed infrastructure supports and facilitates patient engagement, enabling study development and implementation. We sought to understand infrastructure needs from recipients of Patient-Centered Outcomes Research Institute (PCORI) pilot grant awards. Methods: We surveyed recipients of PCORI pilot project awards on self-perceived strengths in engagement infrastructure through PCORI's Ways of Engaging-Engagement Activity Tool survey, and interviewed leaders of 8 projects who volunteered as exemplars. Descriptive statistics summarized the survey findings. We conducted a thematic analysis of the interview transcripts. Results: Of the 50 surveyed pilots, 22 answered the engagement infrastructure questions (44% response rate). Survey and interview findings emphasized the importance of committed institutional leadership, ongoing relationships with stakeholder organizations, and infrastructure funding through Clinical and Translational Science Awards, PCORI, and institutional discretionary funds. Conclusions: These findings highlight the importance of and how to improve upon existing institutional infrastructure.
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