Strengthening Diversity in Research Partnerships

Understanding the Problem
Diverse, vulnerable, and underserved populations are underrepresented as participants in health care research. Lack of representation of diverse groups limits the generalizability of research and may also significantly contribute to health disparities. Authentic partnerships with under-represented communities in all stages of research represent a key strategy to address the inequity and disparities. Collaborative models of research, such as community-based participatory research (CBPR), offer methods for engaging diverse groups in research. However, CBPR is a relatively recent approach used in health care research and has not been widely adopted. To support partnerships in research and broader adoption of collaborative approaches to research, researchers need guidance to change the long-standing culture and beliefs in academic and research centers that may lead to reluctance or inability to collaborate with diverse patient, family, and community partners (PFC partners).
Project Background In 2017, the Institute for Patient- and Family-Centered Care (IPFCC) received a two-year Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) for the project, Strengthening Diversity in Research Partnerships: Knowledge to Action. This funding supported two major efforts:

  • Special programming at IPFCC’s 8th International Conference on Patient- and Family-Centered Care: Promoting Health Equity and Reducing Disparities held in Baltimore, MD in June 2018 featuring partnerships with diverse and underserved communities in health care research; and
  • Development of a Knowledge to Action Guide and Resources providing guidance and best practices for creating partnerships with typically under-represented PFC partners in research.

The Guide includes content gleaned from:

  • An extensive literature review
  • Consultation and input from a project Expert Advisory Panel comprised of researchers, health care professionals, and diverse PFC partners
  • Interviews with experts who are involved in partnerships in health care research
  • Conference presentations
  • Site visits to three exemplary programs that authentically partner with diverse and vulnerable populations in research

While a collaborative approach to health care research has not been widely adopted, we learned through the project activities that there are researchers and PFC partners across the country committed to partnerships to plan, conduct, and disseminate research. We are grateful to the researchers and PFC partners for sharing their knowledge and insights and helping us build an understanding of how to advance partnerships with diverse PFC partners in research.

Overview of the Guide
To achieve its aim of conducting patient-centered outcomes research, PCORI created the PCORI Engagement Rubric, as a framework to offer concrete ways to operationalize engagement that incorporates patients and other stakeholders in all phases of research. The framework includes Principles of Engagement; definitions of stakeholder types; key considerations for planning, conducting, and disseminating research; engagement activities; and examples of promising practices from PCORI-funded projects (Sheridan et al., 2017). Building on the foundation of the Rubric, the Strengthening Diversity in Research Partnerships project team expanded the original Principles of Engagement to recognize and address the unique circumstances that arise when partnering with diverse and typically under-represented communities in research. This expansion was based on the lessons learned about meaningfully and authentically engaging these communities from researchers, clinicians, and PFC partners who participated in project activities (see the table listing the expanded Principles and Strategies on page 11 of the Guide).

Principles of Engaging Diverse PFC Partners in Research
• Trust
• Reciprocal Relationships
• Honesty
• Transparency
• Cultural Competency
• Co-Learning
• Partnerships

Each section of the Guide presents one of the seven principles and offers an Overview, Strategies and Insights, Stories from the Field, Top Tips, and Selected Resources. The Guide offers practical guidance to learn about, facilitate, and strengthen engagement of diverse PFC partners such that research can be co-designed and co-implemented and we can move forward toward the elimination of health disparities.

It was clear from all of the experts—patient, family, and community partners and researchers—who shared their wisdom that developing meaningful and authentic partnerships takes leadership, time, resources, flexibility, and most importantly, a firm commitment to be open to learning from each other. By engaging in true partnerships we will be better equipped to design and conduct research that ultimately leads to knowledge benefiting all and fostering the elimination of disparities existing in health and health care. 

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