Despite notable advances, communities impacted by mental healthcare disparities still do not receive the full benefits of patient-centered comparative clinical effectiveness research (CER). The challenges, in part, reflect that the people most impacted by mental healthcare disparities are frequently not engaged in patient-centered CER research. Engagement of individuals underrepresented in research partnerships provides a critical foundation for creating and sustaining the structural changes required to advance mental health equity. Engagement of individuals underrepresented in mental health research partnerships presents opportunity to include diverse perspectives into the scientific process, thereby helping to identify the unexamined assumptions that create barriers to translating scientific advancements into equitable mental health policy and practice.
Barriers to meaningful patient-centered CER engagement loom largest for individuals underrepresented in research partnerships who identify as a minority or are minoritized due to their young age, race or ethnicity, disability status, gender or sexual identity and those who are pregnant or postpartum. A complex configuration of factors presents barriers to participation for individuals underrepresented in research partnerships to fully join in research engagement activities, such as needs for childcare. Opportunities exist to use a rapidly growing number of engagement methods to optimize patient-centered CER collaborations. However, limited attention has been given to synthesize available evidence and generate consensus on which and under what conditions engagement methods optimize patient-centered CER partnerships with individuals underrepresented in research partnerships.
Systematic reviews on engagement methods broadly identify a gap in our understanding of how best to select engagement methods that will optimize research academic-community partnerships. Rather than having engagement methods unilaterally selected by researchers, selection of engagement methods by community partners themselves holds the potential to address power inequities in patient-centered CER partnerships. Doing so could help ensure community-driven processes in which engagement methods are selected with and by communities underrepresented in patient-centered CER partnerships. In response, this research team will undertake “engagement mapping,” a systematic and stepwise approach that empowers community partners to identify the challenges in research partnership, select and implement a responsive engagement method, and participate in evaluation and improvement from these experiences.
Accordingly, the study team will conduct research that fulfills three aims:
- Assemble the best available evidence on engagement methods for underrepresented communities through a scoping review
- Engage the expertise and judgement of key community partners to assess and prioritize this evidence base in a modified Delphi Panel
- Conduct a pilot study that refines, implements and assesses feasibility of engagement mapping.
The pilot study will assess feasibility and accessibility (primary outcomes) as well as secondary outcomes grounded in the Donabedian framework to pilot and assess feasibility of a process for evaluating structure/context, process and outcomes. The objective of this study is to advance meaningful engagement of populations underrepresented in patient-centered CER mental health research studies.
This study was derived from a robust community-academic partnership that includes Postpartum Support International, a community-based organization that mobilizes individuals with lived expertise to improve perinatal mental health care, and four established advisory councils of individuals from communities underrepresented in research partnerships and diverse in race and ethnicity and geography. Advisory councils include:
- Lifeline for Moms Individuals with Lived Expertise Advisory Council (expertise in perinatal mood or anxiety disorders)
- Postpartum Support International Best Practice Committee for Perinatal Mental Health Equity (a wide range of professionals who care for perinatal individuals)
- Implementation Science and Practice Advance Research Center (iSPARC) Youth Advisory Board (young adults with lived expertise of mental health challenges)
- iSPARC Family Advisory Board (family members of youth with lived expertise of mental health challenges)
This study will develop a conceptual framework for engagement methods for communities underrepresented in research partnership and related reporting guidelines to inform future studies. Researchers will also develop a “menu of engagement methods” that will summarize each engagement method, including definition(s), barrier(s) to engagement targeted, fidelity measures available (if any) and synopsis of data available on effectiveness. To assist others in using engagement mapping, the study team will also disseminate a manualized protocol for engagement mapping and evaluation tool to assess impact on engagement structure/context, process, and outcomes. The study team will disseminate research findings for other community-academic partnerships through traditional academic avenues and by engaging key community partners to additional strategies for dissemination.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.