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The 21st Century Cures Act mandated that new medication research include patient focused drug development initiatives. The act also recognized CPSSs as integral members of the healthcare team. Inclusion of CPSSs within care teams is associated with reduced hospitalization, increased treatment engagement, and a renewed focus on patient desired outcomes. CPSSs are people with lived experience in navigating complex mental health systems and whose unique perspective helps guide peers on their journey to wellness. In the same manner that CPSS knowledge has improved clinical outcomes, partnering with CPSSs during CNS drug development may provide wellness outcomes in clinical trials that are more meaningful for people with lived experience. To this end, a CPSS Ambassador program was initiated.
Methods
Of 85 peer support specialists identified by internet searches, Linked-In, and peer support specialists’ registries, 7 CPSSs met our criteria (i.e., having lived experience of psychosis and being a member of a treatment team) and agreed to be part of our ambassador program. Interactions included 6 monthly virtual meetings and a live roundtable meeting. The objectives of the program were to: 1) understand unmet needs in people with lived experience and identify impediments to effective treatment, 2) learn best practices for discussing medication use to support wellness, 3) identify resources that can help educate people and families with lived experience, and 4) highlight the importance of CPSSs within healthcare teams to optimize treatment outcomes.
Results
This CPSS ambassador program emphasized the need for shared decision making and partnership to forge a positive treatment team alliance. As such, treatment goals should be tailored to patients’ needs (“nothing about me without me”). A major obstacle to effective treatment is the presence of bias or stigma among health care practitioners. Specifically, certain language used by clinicians has the potential to ostracize patients and negatively impact treatment. Medications should be discussed as one pillar of a larger treatment plan and not as a “fix” for symptoms. Educational resources written in layman’s terms are needed to explain treatment algorithms and medication side effects. And finally, CPSSs make a significant contribution to person-focused positive outcomes and are an essential part of the treatment team. CPSSs are a conduit of lived experience and advocate for the individual
Conclusions
The following key outcomes were illuminated because of this work together: CPSS’s are liaisons that facilitate the intersection between the treatment team and people utilizing mental health systems. CPSS’s are critical to successful navigation of the mental health care system and reaching desired outcomes. Best practices for treatment teams are about effective, person-based and stigma free partnerships for positive and patient focused outcomes.
Funding
Sumitomo Pharma America (formerly Sunovion Pharmaceuticals Inc)
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