Building a Roadmap for PCOR/CER Priorities for Communities of Color Living with PTSD

Background: Communities of color experience significantly higher rates of stress and exposure to trauma than the general population. These experiences are associated with substantial rates of post-traumatic stress disorder (PTSD). Despite the availability of effective PTSD treatments, a patient-centered outcomes research (PCOR) systemic review shows limited comparative effectiveness research amongst communities of color to determine which among several available evidence-based PTSD interventions might be acceptable and relevant to their concerns.

Proposed Solution to the Problem: TRCDO Pastors4PCOR (P4P) will develop a Trauma-Informed Learning Community (TILC) to create a PTSD Research Agenda endorsed by the community for the community. The long-term goal of this project is to increase the capacity and reach of community members to partner in patient-centered research designed to address trauma and PTSD in communities of color. 
 
Objectives: Short term, the primary objective is to upskill Community HUB CORE members; research ambassadors; and SPOKE stakeholders (e.g., from government, medical and academic research; protective services education) so they can actively engage the wider community in storying PTSD priority areas and message a collaboratively agreed-upon agenda for PCOR/CER research in PTSD. The project team’s Community HUB is operated by TRCDO on the South Side of Chicago.

Activities:

1. The Community HUB will establish a Trauma-Informed Learning Community (TILC). The TILC will be recruited from recently trained community HUB Research Ambassadors who presented on mental health topics, medical/academic research stakeholders with experience of training (The Chicago Center for Health Disparities/authors of Inspiring Change), city government (Chicago Department of Public Health) and deliverers of community preventive services (Resilient Communities Initiative leader, Worry Free Community executive director, TRCDO, and American Association of Christian Counseling).
2. The TILC, on behalf of the Community HUB, will collect, share, and story a multistakeholder understanding of PCOR/CER evidenced-based PTSD interventions and discuss their appropriateness to community needs and preferences. They will also compare curriculum content from four sources: 1) PCOR research fundamentals, 2) P4P engaging faith-based communities with healthy research; 3) Inspiring Change; and 4) P4P HUB training in research topic identification and multistakeholder team formation. 
3. From the information gathered, the TILC will design, develop, and deliver a short interactive trauma-sensitive engagement curriculum for: 1) existing and new HUB Research Ministry Ambassadors (RMAs), 2) deliverers of community preventive services, 3) government, and 4) medical and academic research stakeholders. 
4. With mentorship from the TILC, all trained HUB Community research RMAs will recruit individuals and additional stakeholders from communities of color for a larger convention to share experiences and prioritize trauma treatment research topics. 

Project Outputs and Outcomes 
Year One Outputs: 

• HUB CAB meets once to review work plan and approve operational amendments. 
• Establish multistakeholder Trauma-Informed Learning Community (TILC) appointed by the Community HUB. TILC meets five times in Year 1. 
• TILC compares online and hard copy content of four PCORI-funded training curricula: Inspiring Change; Pastors 4 PCOR: Engaging Faith Based Communities; Building a Community Support HUB for Connecting Patients, Stakeholders and Researchers; and PCORI Research Fundamentals. 
• TILC completes adaptation of content for short, interactive, trauma-sensitive engagement curriculum.
• Short, interactive, trauma-sensitive engagement curriculum implemented by Trauma-Informed Learning Community 
• Companion videos of Community Research Ministry Ambassadors and stakeholders supporting the trauma-sensitive approach to research engagement

Year Two Outputs: 

• HUB CAB meets once to review workplan progress and approve operational amendments.
• Multistakeholder Trauma-Informed Learning Community meets three times in Year 2.
• HUB approves TILC curriculum and recruitment of trainees.
• Virtual interactive Training is completed and evaluated.  
• TILC mentors and trainees recruit for convening. 
• HUB organizes community convention to deliver a roadmap and agenda for CER PTSD research. This includes recommending and identifying evidenced-based PTSD interventions appropriate to needs and preferences. Given the COVID-19 pandemic, special attention will be given to developing partnerships, resources, and support that can be shared virtually to ensure the long-term value of the research capacity established. This includes virtual meetings, online resource sharing via pre-existing media used and approved by HUB members, GroupMe, and Google Classroom. 

Short-term outcomes (during the project period):

• Outcome #1. HUB to define roles, operationalize responsibilities for TILC, and create a trusted environment for collaborative working practices. 
• Outcome #2. TILC will have improved knowledge of research methods including PCOR/CER as well as improved capacity to meaningfully engage in CER PTSD research for minority populations. 
• Outcome # 3. Information review: Evidence based of PCOR/CER/research priorities for communities of color/minority populations experiencing or impacted by trauma will be identified and compiled by the TILC and applicability of results from other PCORI-funded studies will be reviewed.  

Medium-term outcomes (0-2 years post-project period):

• Outcome #4. TILC members will lead training efforts to upskill HUB members in knowledge and understanding of PCOR/CER PTSD research and mentor trainees in storying traumatic events.  
• Outcome #5. Upskilled CORE members will lead the work of engaging the wider community in one or more story circle. 
• Outcome #6. Community Convention held. PCOR/CER PTSD Research Agenda created with community priorities flagged. 

Long-term outcomes (3+ years post project): 

• Outcome #7. Trauma survivors will be routinely engaged in PCOR/CER and research will reflect the priorities identified by patient stakeholders as meaningful.  
• Outcome #8. PTSD research will be more patient-centered to address research on topics that matter most to long-term survivors.  

Patient and Stakeholder Engagement Plan: Patient stakeholders on the TILC are HUB Research Ambassadors who have witnessed or experienced trauma and are CER literate. The TILC will be comprised of 8 - 10 HUB Research Ministry Ambassadors who are patients or persons living in communities experiencing health disparities; community leaders providing preventive services, such as Resilient Village Initiative and Christian Counseling; or medical and academic research stakeholders in the fields of mental health or who are CER literate and with experience in training for patient-centered research. These varied stakeholders will be drawn primarily from established and active HUB contacts, which number well over 50 at the time of this writing. The protocol consists of four key phases (P#):  P1: The TILC will meet five times in year one and three times in year two, for an hour each meeting. Chairpersonship will rotate so that members can draw on their expertise to lead in meetings. P2: An additional 10 - 15 Research Ministry Ambassadors and Community Stakeholders who can demonstrate CER research literary skills will be trained using the adapted short interactive trauma-sensitive curriculum. These participants will be asked to complete four modules of an hour each in length. P3: Upon completion of training, the participants will engage others as they put their learning into practice by recruiting up to 10 community members each to participate in a Community Wide Story Circle that will be two hours in duration. P4: The Community-Wide Story Circle Convention will be hosted and the final prioritization of issues and topics for recommendation for PCOR facilitated. TRCDO anticipates attendance of 100 participants at the final convening. Stipends will be paid to each participant for various levels of project engagement.

Project Collaborators: The Chicago Health Disparities Center at Illinois Institute for Technology, one of the stakeholders committed to the proposal, has a track record of involving African Americans with mental illness (such as depression, anxiety, and post-traumatic stress) in all stages of the CER research process. Their community- and patient-centered approach Inspiring Change (2016) supports stronger research projects—projects that explore important problems and make significant changes in the community—and has been successfully adapted by other PCOR/CER projects. Dr. Lindsay Sheehan and IIT have provided a letter authorizing the use and adaptation of this PCORI-funded resource.