Background/Problem: There is not enough CER research that responds to the concerns of behavioral health system users (i.e., patients), especially with respect to the concerns of those who are dissatisfied with mainstream behavioral health care. The project team’s research priorities include wellness techniques, nonclinical supports, peer support, and fully informed consent about medication. Yet no systematic surveys have been completed to define the recovery movement and to ask what the related CER research priorities are. Also, very few advocates, funders, or researchers understand the science on community engagement. This science is needed to truly overcome barriers to full inclusion and full patient-advocate participation in CER research.
Solution/Aims/Activities/Outcomes: Poetry for Personal Power will work with national experts on survey techniques to complete a national survey of recovery movement priorities. The project team will work with Yale University to synthesize the previous PCORI-funded behavioral health advocate training process into a replicable business system. The team will train 20 advocates using its pilot-adapted training. Fifteen of these trained advocates will be young adults, LBGTQ advocates, or African Americans. The project team will develop and disseminate a publication that describes these recovery movement CER research priorities and preferences in detail. The researchers will lay out a compelling case for the involvement of patient stakeholders in behavioral health research. This four-pronged approach (service-user preference information, community engagement science, framing communication science, strong dissemination) might be needed to significantly increase the rates of engagement of patient advocates in the behavioral health research process.
Patient Engagement Plan: The patient engagement plan includes the core project team of eight people with lived experience of recovery from behavioral health concerns. The team includes e-patients, recovery movement leaders, and researchers. The CER research collaborator trainee team will be 20 individuals with lived experience of recovery. The team will take part in monthly meetings, social media discussion groups, online survey methods, and other continued and intense forms of two-way and mutual decision making. The team’s full national network recruited by project partners will give input into recovery movement CER research priorities, the community engagement science barriers to full inclusion, and the dissemination priorities for advocate and researcher training tools. Other stakeholders include researchers and funders who will be consulted frequently to learn more about community engagement science and barriers to full engagement.
Collaborators: Poetry for Personal Power is leading a research team including Larry Davidson, PhD, of Yale University Program for Recovery and Community Health, and Evelyn Yang, PhD, Senior Associate of Community Science. The dissemination team of national-level e-patient advocates includes Paul Komarek, JD, of Human Intervention Consulting, Regina Holliday of the Walking Gallery, and Casey Quinlan of Mighty Casey Media, LLC. The team has also confirmed that the IConquerMS PPRN will help support dissemination.