Connecting the Dots Part II: Building a Seamless System for Women with Chronic Conditions – Before, Between, and Beyond Pregnancy
GOAL: We will build an intentional, equity-centered cross-discipline, cross-sector, patient-driven national Collaborative to create a roadmap for improving services for women with chronic conditions and their infants before, between and beyond pregnancy. The road map will identify key care points and program, training, and policy levers as well as creative strategies for engaging chronic disease leaders in public health and clinical care in maternal well-being. We will work together to act on those levers as well as to share the roadmap with a broad range of partners across the state and country.
BACKGROUND: The current system of care ileaves many women unheard and without timely care they need to not only survive but thrive. State-level Maternal Mortality Review committees have identified the importance of proactively managing chronic conditions as a critical prevention strategy. Stories from committees and families have repeatedly identified that women were not given the care they needed in a timely manner, resulting in a near-miss or loss of life. There is not yet an organized approach to this essential component of prevention work.
Women who enter pregnancy with chronic conditions are at higher risk for postpartum complications. Women who develop pregnancy-related chronic conditions also have elevated risk. The current healthcare system is not designed to provide these high-risk women with the integrated care they need to address immediate and urgent postpartum crises and to support their recovery and management in the years after childbirth.
When mothers fail to thrive, so do their infants. Unmanaged or poorly managed chronic conditions prior to and during pregnancy can increase the risk of childhood illness and chronic conditions for the baby. Postpartum mismanagement can impair infant feeding and contribute to pain and mobility challenges experienced by mothers, affecting their ability to care for their infants and increasing the likelihood of experiencing depression, anxiety, and isolation. This project will take on the neglected and critical work to reduce maternal death and sickness and improve infant health by improving chronic disease care for women.
ACTION STEP 1: Identify existing strategies, care gaps and prospective partners. Engage 4-5 expert partners to fully engage people with lived experience. Conduct a background scan of the current environment to identify opinion leaders, entrepreneurs, and community groups that are working in this space as well as emerging research, strategies, solutions, and barriers. This will include a review of published and gray literature, key informant interviews, and a survey. Known gaps and innovative programmatic and policy responses will be detailed and used as a foundation to begin building the Road Map Report and recruiting collaborative members. (Months 1-6)
ACTION STEP 2: Recruit and sustain a multidisciplinary 25-member Collaborative focused on the care of women with high-risk and chronic conditions before, between, and beyond pregnancy. Experts, including physician and nursing leadership from obstetrics, family medicine, emergency medicine, internal medicine and associated specialties, public health leaders in chronic disease and women’s health, patient advocacy organizations, and maternal health community advocates will be engaged. We will use a variety of liberating strategies to assess how well we are doing in building relationships within the Collaborative. (Months 1-6)
ACTION STEP 3: Develop a Road Map for Change. We will convene the Collaborative four times to develop a report that details the systems of care and gaps for women with chronic conditions in the preconception, postpartum, interconception and well woman periods and recommendations regarding levers for change to improve care and the system as a whole. This work will be informed by the community of 40 BIPOC women who we will convene via our PCORI Engagement project. (Months 7-13)
Goal 4: Disseminate Road Map and set ongoing communication channels and opportunities for the Collaborative to stay connected. All partners will share the Road Map and accompanying recommendations within their spheres of influence. Methods of dissemination will include journal articles and commentary, sharing of consumer-facing resources and infographics via Show Your Love Campaign and partner social media properties, and webinars, podcasts, interviews, and trainings to reach professionals and the reproductive age public. (Months 14-18)
TIMELINE & FUNDER: This project is funded by the W.K. Kellogg Foundation from January 2021 through May 2022.
CONTACT: Erin McClain at ErinMcClain@email.unc.edu.