Background: Maternal mortality and morbidity are rising in the United States, with Black and Native American (NA) women experiencing rates two to three times higher than white women. Additionally, statistics indicate that between 60% and 80% of total maternal deaths are preventable. Women with chronic conditions are at increased risk; women of color also bear a greater burden of chronic disease risk due to systematic racial inequities. Additionally, despite the importance of receiving optimal preconception and reproductive care, most women with chronic conditions are not receiving the services they need.

Proposed Solution: The project team hopes to reduce maternal mortality/morbidity by improving reproductive care among Black and NA women with chronic diseases. This project supports needed research into evidence-based interventions and quality improvement projects to improve chronic condition diagnosis and treatment that includes a focus on reproductive care. It is expected that connecting researchers with patients will lead to studies and programs that eliminate disparities and save lives.

Objectives and Aims:

Objective 1. Convene and Support a Diverse Learning Community of Patient Stakeholders Interested in Improving Research for Chronic Conditions.

• Aim 1. Recruit 20 diverse Black/NA women with at least one chronic disease. Continue to engage current patient partner research team members.
• Aim 2: Educate patient partners about research principles, approaches, and patient-centered outcomes research (PCOR).
• Aim 3: Communicate monthly with stakeholders to build engagement and knowledge about PCOR and comparative clinical effectiveness research.

Objective 2: Identify PCOR Approaches for Three Research Studies for Three Chronic Conditions Impacting Women’s Reproductive Health.

• Aim 1: Patient stakeholders identify priority chronic conditions.
• Aim 2: Identify three teams of researchers studying chronic conditions and reproductive health and provide consultation about effectively engaging with patient stakeholders in their area of study.
• Aim 3: Hold one session with each of the three research teams to engage with the patient stakeholder team on hypotheses, methods, outcomes, patient engagement, equity, and trust for their project.
• Aim 4: Provide a session summary to researchers, including recommended research strategies.

Objective 3: Launch a Sustainable Patient-Led Advisory Group to Consult with Researchers Working on Chronic Conditions Impacting Women’s Reproductive Health.

• Aim 1: Convene patient stakeholders and three research teams to co-design a patient-led research advisory group and promotional materials based on the Community/Patient Engagement Studio model.
• Aim 2: Partner with the North Carolina Translational and Clinical Sciences Institute (NC TraCS) Community and Stakeholder Engagement team to connect the advisory group into their networks.
• Aim 3: Leverage NC TraCS and the team’s networks to promote the advisory group as a resource for researchers nationwide.

Activities and Engagement Plan: This project builds on a previous PCORI Engagement Award and was co-designed with patient partners. Patient stakeholders will identify as Black and/or NA, have at least one chronic condition, and identify as women/have female reproductive organs. The project team will have four patient partners on their lead team that will meet monthly and engage in all aspects of the project (approximately 120 hours of work). Twenty patient stakeholders will receive monthly communication, one research training session, three sessions with research teams, and one final session to design a plan for a sustained patient-led advisory group (approximately 14 hours). The project will also engage three scientists and their teams who are doing work in patient priority areas and are seeking patient input into their research.

Proposed Outputs and Outcomes: In two years, the project team will create an effective, sustained patient-led advisory group/learning community to build capacity for transformative patient engagement in PCOR/CER via established practices that foster patient agency, equity, and perspective sharing. The project team will inform the work of three researchers/research teams focused on improving reproductive care for Black and NA women with chronic conditions. The project team will enhance the quality of patient engagement in PCOR/CER and promote the availability of this group and the importance of their contributions.

Project Collaborators: An experienced team at the University of North Carolina at Chapel Hill (UNC), along with patient and community partners, will lead this work. The UNC Team includes the Jordan Institute for Families, the Collaborative for Maternal and Infant Health, the Family Medicine Department, the OB/GYN Department, and the Maternal Health Learning and Innovation Center.