Background: Engaging populations that experience health disparities is challenging. Researchers have good intentions, but token engagement, engagement after the fact, and engagement without reciprocal relationships are common. Research teams must learn how to effectively dialogue with communities and build trust before the research process begins. However, many research team leaders have not received any training on health disparities and the social determinants of health, and do not have the skills necessary to approach their work with a health equity lens.
Proposed Solution to the Problem: The Creating Authentic Tools for Engagement (CrATE) project will develop a workshop and learning community to teach researchers how to intentionally and strategically advance health equity in the research process. Researchers will learn the language and conceptual frameworks necessary to approach stakeholder engagement from a lens of equity. Following the project period, researchers who include diverse, representative stakeholders in the research process will be prepared to ultimately design and implement projects that guide, inform, and enhance comparative clinical effectiveness research (CER) and other patient-centered outcomes research (PCOR) aimed at addressing health disparities.
Objectives: The goal of this work is to improve capacity for authentic stakeholder engagement in PCOR/CER with populations that experience health disparities, and improve readiness for research teams to execute CER that addresses health disparities. The team will intentionally focus on cross-cutting issues and challenges such as mistrust, lack of transparency, tokenism, and others that are not specific to single communities, groups, or conditions, to ensure that the learnings from this work can be used at scale by a wide range of research teams.
Key activities include:
- Identify key stakeholder groups and strategy to recruit project participants
- Conduct literature review of existing cross-cutting tools and strategies to engage populations that experience health disparities
- Work with health equity consultant to develop and assess an engagement workshop designed to build critical engagement skills for research team members
- Work with MPHI’s ECHO team to plan and implement an ECHO series focused on engagement
Projected Outcomes and Outputs:
Short-Term (during the project period)– Research teams will recognize shortcomings in engagement and know how to address them.
Medium-Term (0-2 years post-project period) – Communities of practice around authentic engagement will continue to transform research teams to achieve stakeholder engagement.
Long-Term (3+ years post-project period) – Research teams will have authentic stakeholder engagement at all levels of the research process and will conduct CER and other PCOR that answer questions to reduce health disparities.
Patient and Stakeholder Engagement Plan: A diverse team of Patient-Centered Outcomes Research Institute (PCORI) ambassadors will serve as the project team. Additional stakeholders will be recruited on an ad-hoc basis as necessitated by the work. A stakeholder engagement plan will be developed to 1) ensure that a diverse group of stakeholders are included and 2) stakeholder engagement is meaningful.
Project Collaborators: A diverse group of partners, all of whom have faced health disparities based on race, gender, disability, age, or other factors, have been a part of CrATE since the inception of this idea, and will work to support the implementation of this work as thought leaders and content experts.