research

PCORI Research Project

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: Arthropy (formerly Poetry for Personal Power) worked with national experts on survey techniques to complete a national survey of recovery movement priorities. The project team synthesized the previous PCORI-funded behavioral health advocate training process into a replicable business system and trained multiple cohorts of advocates using the training process.  The project team developed and disseminated a publication that describes these recovery movement CER research priorities and preferences in detail, laying 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, and strong dissemination) is needed to significantly increase the rates of engagement of patient advocates in the behavioral health research process.

Thank you to everyone who participated! Your voice makes a difference. We believe that your experiences matter. Your input is necessary if we are to build systems that more effectively meet the needs of the people they are intended to serve. It was in this spirit that we took on this Recovery Movement Research Priority project that is sponsored by Patient-Centered Outcomes Research Institute, PCORI.

If you are a researcher, or have connections with researchers and would like to participate in the dissemination of this information, please reach out to us at info@poetryforpersonalpower.org and let us know. This is just one of the many advocacy opportunities that we support.

Objective: To identify service user research priorities and preferences outside of traditional clinical treatments and promote best practice advocacy efforts for the continued communication of these priorities.

​Setting Design: Descriptive research – internet-based surveys deployed via email. The first study (Fall 2018) was hosted via Survey Monkey, the second (Winter 2019) and hosted on LogicDepot systems. Surveys were both multi-punch and short response. Surveys were developed and distributed in collaboration with existing national networks that support peer specialists, provide technical assistance to consumer organizations, or advocate on behalf of mental health and addiction service users.

Participant eligibility criteria: Participants were able to self-identify as being a part of the recovery movement, being a person living with SMI/SUD/or Neuro Diversity.

Results: Eight studies were reviewed and two research studies conducted (study 1: Fall 2018, 37 respondents | study 2: Winter 2019, 212 respondents). Comparative analysis done on research results. First study was done with a limited amount of participants that were identified as professional advocates. This set of questions was formulated around funding/promotion / and balancing harms vs benefits. Second study included respondents from a wider population of service users, advocates, caretakers, and mental health workers that identify as members of the Recovery Movement. The initial study concluded that the top priority of advocates is that more research should be done to provide funding mechanisms to pay for peer support (77%) with more recent studies on peer support effectiveness coming in second (57%). Winter 2020 Study finds a majority of service users are interested in research on recovery support groups, effective therapies, and creative outlets as therapies.

Conclusions: This study showed the overall research priorities. It also allowed for comparative analysis between the groups of caretakers/advocates / and end-users. We found that advocates are not wholly in touch with what end users want and there is a need for better Community Engagement training for them to adequately represent the consumer voice. One of the main issues with this is that often advocates are often consumers so they rely on their own voice as if it was the voice of the entire movement. Distinction must be made between the story of the advocate and the story/needs/wants of the movement. The second study indicates that Advocates and Service Users may agree on the most important need however the two diverge across the rest with advocate responses showing little variance (all things are needed) and Service Users leaning towards prioritization. Due to the nature of the Recovery Movement and the historical lack of patient/service user input into traditional medical practice, the responses that we received from the second study (85% service users) showed small differential between preferences and was almost even across the board proving the necessity for more research in all areas. To increase patient-centered in decisions involving research, further research and advocacy efforts with solid community engagement science for a larger sample, and for a larger number of conditions should be undertaken.