All women and men of reproductive age will achieve optimal health and wellness, fostering a healthy life course for them and any children they may have.PCORI Part II
Maternal morbidity and mortality in the U.S. are worsening, especially among Black and Native American populations. One important preventive strategy is assuring the reproductive health and well-being of women living with chronic conditions. Preconception and reproductive care can help improve women’s health and maternal and infant health outcomes for those who wish to become a parent. There are serious gaps in research about who should deliver this care as well as how and when, particularly for Black and Native American women who bear a higher risk for health disparity.
Project Objectives:
Aim 1. Recruit 20 diverse Black/NA women with 1+ chronic diseases. Continue to engage patient and community partners on the research team.
Aim 2: Educate about research principles, approaches, ethics and Patient Centered Outcomes Research. Create partnership agreements.
Aim 3: Maintain a listserv, private Facebook page and communicate with all partners monthly to build engagement, connection, and knowledge about research.
Aim 1: Patient partners identify priority conditions.
Aim 2: Identify 3 researchers (and their teams) and offer consultation to them about effectively engaging with patient stakeholders in their area of study.
Aim 3: Hold 1 session with each of the 3 research teams to engage with our patient partners team on hypothesis, methods, outcomes, patient engagement, equity, and trust for their project.
Aim 4: Provide a summary to researchers of the session including bi-directional learning points and recommended research strategies.
Aim 1: Convene patient stakeholders and 3 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 North Carolina Translational Research and Clinical Sciences (NC TRaCS) Institute’s Community and Stakeholder Engagement team to connect the advisory group into their existing community and patient stakeholder networks for future collaboration with researchers.
Aim 3: Leverage NC TraCS (including the PCOR Stakeholder, Technology and Research (STAR) Network) and our team’s extensive networks to promote the advisory group as a resource for researchers nationwide.
Past Work Together: Here is a link to a page that describes the work our team did that started this new project!
Project Collaborators: This is a partnership between the School of Medicine, the School of Social Work, Healthy Start Pembroke, the American Indian Center, NC TraCS at UNC and a variety of faculty and clinicians across North Carolina.
Project Team: Dr. Sarah Verbiest and Dr. Narges Farahi are the Co-Principal Investigators. Dr. Rachel Urrutia-Peragallo and Dr. Ceshae Harding are Co-Investigators. Erica Little, Melissa Richardson, Shaunette Howard, Erica Chambers, and Qua Lynch Adkins are Community Co-Investigators. Yvette Thompson is the Project Manager focusing on the patient stakeholders. Katherine Bryant is a project advisor. We are excited to also work with Simone Frank, Nisha Datta and Alicia Bilheimer from UNC’s NC TRACS Community Engagement Core.
Timeline: This is a two-year project that began February 1, 2023 and ends on January 31, 2025. The total amount of the award is $200,000 with the majority of the funds being used to support patient stakeholder time and engagement.
Funder: This project is funded through at Patient-Centered outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN-20209).
RESOURCES:
Interested in learning more about research? PCORI has a series of great materials. Click here to view PCORI’s Research Fundamentals Videos and Frequently Asked Questions and here for their interactive PDF. Click here to read a blog about the Eight Principles of Patient-Centered Care.
People may wish to review the Glossary of Terms from the Community Engagement Studio Toolkit (CESToolkit 2.0 pp. 41-43.pdf (meharry-vanderbilt.org) and this video PREP-IT- Team Defines Patient-Centered Outcomes Research – YouTube.
Helpful Model: University of South Carolina Patient Engagement Studio
