Background: Severe maternal morbidity (SMM)—unexpected and highly preventable pregnancy, delivery, and postpartum complications—occur nearly 100 times more frequently than maternal death. Chronic hypertension in pregnancy—hypertension present before 20 weeks' gestation—contributes to nearly 50% of SMM cases and 30% of preterm birth. Black women in Kansas are three to four times more likely to experience SMM, deliver preterm, and enter pregnancy with chronic hypertension. Research to reduce SMM for Black women is hindered by the lack of focus on chronic hypertension, aspirin-to-treat chronic hypertension, stakeholder engagement, and a collective approach that elevates the voices of Black parents.
Proposed Solution to the Problem: For over five years, Sharla Smith, PhD, MPH, and Michelle Redmond, PhD, MS, have worked closely with the Black Kansas community to raise awareness about maternal health disparities. In 2021, Smith founded the Kansas Birth Equity Network (KBEN), engaging 44 diverse stakeholders, including 11 patients, to develop a research plan to reduce maternal stress and neonatal mortality and create birth equity. The KBEN-Stakeholder Collaborative (KBEN-SC) will engage non-traditional stakeholders to identify shared patient-centered outcomes research (PCOR) priorities for research on SMM associated with chronic hypertension. The team will continue to engage 44 KBEN members and recruit 10 patients who have experienced SMM and chronic hypertension to elevate the voices of Black women with a lived experience of chronic hypertension.
Objective 1: Recruit, engage, and train a Black patient advisory group (n=10), who experienced chronic hypertension during pregnancy into the birth equity network, including providing training that covers PCOR and comparative clinical effectiveness research (CER) best practices and sustains KBEN members.
Objective 2: Develop a five-year research plan for conducting PCOR/CER around SMM associated with chronic hypertension and an interactive online patient-led engagement map to increase engagement of patients with severe maternal morbidity. The project team will work with these trainees, as well as sustain the existing KBEN members, to launch the KBEN-SC and develop online interactive manuals and processes to increase engagement of patients with SMM and patient-led engagement map to increase patient-engaged SMM research.
Objective 3: To conduct formative and summative evaluations of the engagement approach and the projects and products available to support and advance PCOR/CER around SMM associated with chronic hypertension.
Activities: The leadership team and patient advocate leads (PALs) will develop a collaborative of KBEN stakeholders and parents who experienced SMM associated with chronic hypertension. Newly recruited patients will be trained using the KBEN birth equity training. The PALs will recruit patients and lead efforts to conduct six virtual listening sessions to solidify shared priorities for PCOR around SMM associated with chronic hypertension, develop an online interactive patient-led engagement map for SMM and chronic hypertension, and develop a five-year research plan for PCOR/CER on SMM associated with chronic hypertension.
Projected Outcomes and Outputs: The primary outcome is the establishment of KBEN-SC, the development of a patient-led engagement map, and a five-year PCOR research plan. The KBEN-SC will develop a discussion guide for listening sessions that will be shared as a PCORI engagement tool; publish the KBEN-SC lessons learned, including barriers, facilitators, and research priorities in a national journal; and develop a shared research plan that will guide PCOR research to reduce SMM associated with chronic hypertension.
Short-term outcomes during the project period include:
- Recruit and train a Black patient advisory group (n=10) in the KBEN birth equity training from the previous PCORI Engagement Award project and sustain the original 44 KBEN members.
- PALs will work with the leadership team to recruit members of the Black patient advisory group.
Medium-term outcomes (0-2 years post-project period) include:
- Develop an online interactive patient-led engagement map to increase patient engagement in PCOR/CER.
- Develop a tailored dissemination plan targeted at communicating PCOR findings among Black women with SMM.
Long-term outcomes (3+ years post-project period) include:
- Develop protocols and methods to implement five-year research plan to increase the uptake of SMM associated with chronic hypertension PCOR/CER.
- PALs will work with the leadership team to sustain KBEN-SC around SMM associated with chronic hypertension.
Patient and Stakeholder Engagement Plan: This engagement project builds on the work of an originally funded PCORI Engagement Award project, and includes patient-led engagement. The PALs will recruit 10 patients, lead listening sessions, assist with sustaining KBEN-SC, and help develop an online interactive patient-led engagement map and shared research plan. The online interactive map will be used by the University of Kansas and other KBEN-SC organizations to engage patients with SMM and chronic hypertension outcomes in research and share the patient experience with SMM in research and shared decisions.
Project Collaborators: The collaborators are March of Dimes, Every Baby to One, Real Men Real Heroes, KC & Wichita Black Breastfeeding Coalition, Kansas Children Service League, Healthy Families Wyandotte & Sedgwick County Health Departments, Village Clinic, Youth Empowerment Services, United Healthcare, Moms Clinic, Truman University Health System, Uzazi Village, Cradle KC, Wichita Birth Justice Society, Kansas Sisters and Brothers for Health Infants, Kansas Maternal Mortality Review Committee, Kansas Fourth Trimester Initiative, United Health, and New Birth Company.
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Blog: Improving Maternal Health Through Engagement
May 23, 2023 — Did you know cardiovascular disease is a high-risk factor for pregnant women? As we mark Women's Health Month in May, read about two PCORI-funded Engagement Award project teams, including this project's team, that are engaging a range of voices to better understand how cardiovascular disease impacts maternal health.