Women’s health care is a patchwork quilt of fragmented services. Women with gestational diabetes (GDM) and other pregnancy complications have a high risk for chronic illness (type 2 diabetes) in later life, yet follow-up and preventive care is not routinely offered or received by women after birth and the postpartum period. The chasm between reproductive and preventive care for women is wide, deep, and costly to women, to clinicians’ effectiveness, and to society. This project uses GDM as a case in point to galvanize diverse stakeholders to build systems-based bridges to address the fragmentation in women’s health care. An innovative two-day national invitational conference will bring together patients, providers, advocates, clinician-scientists, and health system leaders to share expertise and devise a national strategy for research and action to bridge the chasm between women’s reproductive and ongoing primary care. A stakeholder engagement leadership council, drawn from these sectors, will plan and convene the conference, invite their constituents, and take part in the dissemination of results.
During day one of the conference, participants will be trained using techniques from improvisational theater to tell stories from their own perspective—using data and experience—about how the absence of follow-up care after complicated pregnancies impacts the health of women over the life course. During day two, participants from across sectors will engage in “innovation cafes” to brainstorm creative strategies that will bridge the chasm between reproductive and primary health care for women, and identify priorities for national research and action. Strategies may range from far-reaching system redesigns to system patches to specific patient or provider communication or behavior change approaches. During the second year of the project, the team will disseminate the National Strategy for Research and Action to Bridge the Chasm in Women’s Health Care in peer-reviewed journals and on a web-based portal. The goal is to engage patients and advocates in the translation of knowledge from research into strategies that will work in the context of women’s lives and result in ongoing preventive care for women after pregnancy, particularly when complicated by GDM and other conditions that are harbingers of risk for chronic illness later in life.
The knowledge creation and dissemination approaches in this proposal are rooted in the power of patient engagement, which recognizes other forms of expertise and puts patient representatives at the forefront. The project team seeks to avoid the trappings of academic control that can take over if leadership is not intentionally shared and pioneering methods are not implemented. Conference planning and generation of research and action ideas will be guided by joint leadership from the stakeholder engagement leadership council. The team plans to present a pioneering format for the conference, one that is philosophically rooted in improvisational theater and storytelling that inspire deep empathy and understanding across boundaries and transform power relationships. The project team anticipates that this approach will help it move beyond identifying narrow problems and siloed approaches to finding holistic solutions.
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Final Report: A National Agenda for Research and Action
In the United States we are far from achieving equity, holism, and coherence in women’s health care. Nowhere is the gap wider than after the postpartum period when pregnant and parenting people lack the systematic care offered to their children. “Bridging the Chasm (BtC) between Pregnancy and Women’s Health over the Life Course”, funded by a PCORI Eugene Washington EAIN Conference grant as well as by NIH (NIDDK and Office of Research on Women’s Health), brought together patients, advocates, researchers, clinicians, policy-makers, and health system innovators to co-create a National Agenda for Research and Action to BtC. We launched the initiative with a pioneering national conference that featured collective storytelling and collaborative roundtables to outline a sweeping agenda to transform the narrative and the system of care available to all pregnant and parenting people-and especially to people of color who shoulder the highest burdens of maternal morbidities and mortality across the chasm. Members of all stakeholder groups participated in seven Working Groups to flesh out the Agenda. Planks include transformative policies, research that aligns with women’s lived experience, high touch models of care, strategies to eliminate racism in maternal health care, medical record innovations to preserve women’s stories across providers, a call to invest in community organizations, and campaigns to educate the public about root causes of inequities in women’s health care. The report and summary attached here lay out the sweeping Agenda, the rationale for the recommendations, and many resources for the next crucial steps of dissemination and implementation.