A roadmap toward equitable, coordinated, quality reproductive care for women with chronic conditions COMMENT

All people deserve the opportunity to live into the fullness of their bodies and gifts. While some people in the US have this opportunity, many struggle against structural racism to access needed medical care and resources. This is particularly true for people with chronic health conditions. Rising maternal mortality and morbidity, stagnant infant mortality, and rising death rates for US women ages 25–34,1 along with disparities in outcomes for Black and Native American women, birthing people, and infants, point to an urgent need for change. One foundational and potentially lifesaving yet underfunded strategy for change is the provision of equity-centered, holistic, and respectful health care that includes the full suite of reproductive wellness services. The work shared in this commentary and other articles to appear in the ongoing HSR Special Section on Chronic Conditions and Women's Reproductive Health shines a spotlight on reproductive care for women of childbearing age with chronic conditions. Our work considers reproductive health to include contraception, abortion, preconception health, fertility services, support during miscarriage and stillbirth, and more. Decisions around reproductive health for people with chronic conditions are complex. They have life-altering, even life-ending consequences, including the chance to achieve parenthood. However, reproductive care for women with chronic conditions is often neglected by researchers, funders, policy makers, and medical professionals. The articles in this ongoing special section are meant to guide the research, policy, and health care community in focusing on equitable, comprehensive reproductive care that will reduce maternal mortality and morbidity, infertility, miscarriage, and infant loss, and have long-term positive health impacts for families. There is much work to be done. Data about this population are sparse. Available treatments and medications for chronic conditions may not be compatible with conception and pregnancy. Care is rife with bias, limited evidence, poor communication, fragmentation, and access challenges. New abortion restrictions will have a marked impact on this population. The work begins with listening. This commentary summarizes a series of listening initiatives that occurred between December 2021 and April 2022. Each brings unique perspectives to improving reproductive care for people with chronic conditions. Below, we share what was learned from those initiatives and present a unified vision for improved care, characterized by actionable strategies. The initiatives included women with many types of both physical and mental chronic conditions, as common health care experiences span these groups. Our work centered on the perspectives and experiences of people who identify as Black, Indigenous, or both. The vision of better systems of reproductive care that emerged from these important voices is transformative and can help move everyone toward excellent, fully liberated care. Finally, we frequently use the word “woman,” recognizing that at this moment, the word has a socio-political component that needs to be centered and de-centered simultaneously. We acknowledge that many people who were born with ovaries and a uterus need reproductive services and do not fit the binary nature of this term. We recognize that misogyny and transphobia are pervasive in the US. The use of language is complex, imperfect, and inclusive. We convened three listening initiatives that created the work shared below. The Show Your Love Today Initiative's Future Forward: National Convening of Equity-Centered Women's Wellness (September 2021) concluded a project funded by the Maternal and Child Health Bureau at the Health Resources and Services Administration. The summit built energy, created conversation, shared learning, and charted a course forward in preconception health. The proceedings, graphic narrations, and video are available at beforeandbeyond.org/futureforward. Second, co-led by Black and Native American women in North Carolina, the Optimizing Reproductive and Preconception Health for Women with Chronic Conditions study was funded through a Eugene Washington Patient-Centered Outcomes Research Institute Engagement Award. This work focused on listening to Black and Indigenous women with chronic conditions about their reproductive care and wellness. It sought to understand barriers and facilitators to care and design actionable strategies. For more information, the manuscript, Listening to Patients: Opportunities to Improve Reproductive Wellness for Women with Chronic Conditions, is being published as part of this special series. Finally, the W.K. Kellogg Foundation funded Connecting the Dots Part II: Building a Seamless System for Women with Chronic Conditions—Before, Between, and Beyond Pregnancy. The project engaged 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. We identified key care points and programs, training, and policy levers, as well as strategies for engaging chronic disease leaders in public health and clinical care in maternal well-being. Key activities included interviewing experts in women's health, chronic disease, and public health; conducting a review of peer-reviewed and gray literature; convening a collaborative of preconception health experts; and holding focus groups with professionals with expertise in care provision, reimbursement, policy, and advocacy. Together, we examined gaps and system-level issues and solutions in the provision of care for women of reproductive age with chronic conditions. Data from the collaborative meetings and focus groups were mapped and themes extracted. Partners weighed in on the veracity of the findings at a final meeting of the collaborative in April 2022. We worked with a graphic recorder and a facilitator to design the final image that integrated findings across all three projects (Figure 1). The listening initiatives raised issues and ambitions that we organized into a roadmap of strategies to improve wellness. Key components (Figure 1) depict a vision of an abundant environment where all people have agency, reproductive sovereignty, and connection and can flourish. Underpinning the ability to reach this vision is imperative to dismantle structures of thinking, policy, communication, and care that perpetuate racism, misogyny, homophobia, ableism, transphobia, and fatphobia. Without concerted, intentional attention to these systems and actions to change them, we cannot achieve outcomes where people can live with joy in the beauty and health of their bodies and hearts. We describe this roadmap in greater detail below. Agency and reproductive sovereignty are essential for women to reach their optimal trajectory. Agency is the general ability to enact choices and behaviors for action throughout life. Reproductive sovereignty includes whether and when to have children, and how many, but also goes beyond decisions around childbearing. Women must have the ability to retain control over their own bodies and decisions. Systems, including the health care system, must allow the centering of lived experiences and the amplification of women's voices and power to protect each person's full and inherent reproductive rights. An abundant environment is one in which all people can live to the fullness of their potential. It is characterized by a plentiful supply of quality, respectful care; it is one in which a person's whole self is integrated, including their physical, emotional, mental, and spiritual well-being; and it is one in which individuals, families, organizations, and systems are interconnected and interdependent. Flourishing is a state of optimal functioning that includes psychological and social well-being. Care that allows people to flourish increases positive feelings and behaviors, including enjoyment, future thinking, and optimism. Connected care is integrated across physical health, behavioral health, and social services to serve communities in a coordinated and holistic manner. Care is delivered by multidisciplinary teams with a high degree of interprofessional coordination and collaboration. Connection also includes support and interdependence among individuals, families, communities, organizations, and systems. A pressing need is building the evidence base to inform how to provide treatment, information, and care that is equitable, coordinated, and high quality. Action steps include listening, which includes centering community and lived experiences to ensure that all voices and lives are valued. To truly engage and center the voices of women with lived experience, those in positions of power must pay attention, feel empathy, and hear beyond words. The evidence base also requires sex- and gender-disaggregated data that is stratified by age. Finding useful, publicly available data that truly reflects the burden of chronic conditions among women of reproductive age is difficult. Available chronic condition data is often not disaggregated by sex or gender or includes only women well beyond their reproductive years. Additionally, chronic condition data are often available only piecemeal by a specific chronic condition, provider subspecialty, or body system. Minoritized populations, including American Indian and Alaska Native communities, face additional barriers in accessing tribe or community-specific data and in data sovereignty. Sex and gender are important determinants of health and well-being that affect all aspects of health and health care. The long history of lack of representation of women in research is driven by patriarchal and pronatalist concerns about reduction in fertility and/or fetal harm. This has resulted in a lack of differential information on the effects of interventions, drugs, and other treatment modalities on women.2 Filling these data gaps can inform preferences for the uptake of interventions, as well as solutions and care that account for sex- and gender-specific distinctions and the implementation of intersectional care that is responsive to multiple identities. This represents an opportunity for institutions already involved in data collection. The Centers for Disease Control and Prevention and state-level centers for health statistics already collect information on the US burden of chronic conditions. They could enhance survey instruments and prioritize dissemination of information about women of reproductive age, including risk factors and reported chronic conditions. As funders, researchers, and local, state, and national entities set priorities for population-level data collection, requiring collection of sex and gender, as well as age, will allow for analysis that further informs and deepens the evidence base. In addition to better data, more research is needed on chronic conditions, focusing on women's unique needs and experiences. Historically, male-predominant conditions, such as prostate cancer, have been funded at much higher levels than female-predominant conditions, such as endometriosis and fibroids.3 Additionally, the sex- and gender-specific aspects of chronic conditions, such as osteoarthritis, have not been typically researched or fully explored. Research on female-predominant chronic conditions should be funded at least at a level comparable to male-predominant conditions, particularly by key funding institutions such as the National Institutes of Health.4 Research on sex- and gender-specific aspects of chronic conditions should also be prioritized and supported.4 Researchers must take an integrated approach that involves interprofessional collaboration as well as diverse perspectives, including those from people with lived experience, to develop a more detailed understanding of the determinants and characteristics of the intersection of reproductive health and chronic condition presentation, diagnosis, and management. Many providers do not receive preprofessional training that prepares them to answer questions about reproductive health or take their patients' reproductive desires into consideration while helping them manage their chronic conditions. All medical professionals should receive basic information about reproductive anatomy, fertility and contraception, and perinatal health. This patient-centered approach should include information about how to ask patients about their reproductive life plans, the interplay of chronic condition management and reproductive health (including common teratogens that cause fetal or embryonic development), and how to respond once a patient has expressed their intentions. This information should be included in all pre-professional training, in board standards and competencies, and in continuing education. Team-based approaches to collaboration and communication can result in streamlined services that are more patient-centered and truly address reproductive health within the context of chronic condition management. Allied health professionals, community health workers, home visitors, peer supporters, and others should also receive reproductive health training and be engaged as team members to provide holistic patient care. Further, measures and consistent standards for patient-centered reproductive health care are lacking, with disagreement about whom to hold accountable for reaching those standards. Patient-centered measures, standards, and guidelines must be co-created with patients, encompass diverse patient and provider perspectives, and take into consideration the structural determinants of health. Funding priorities, structures, grant reviewers, and mandates play a large role in the direction of programs and policies, particularly at the federal and state level. Siloed programmatic and research funding structures, especially at the federal level, reduce the ability of state-level chronic disease directors and maternal and child health directors to work together to reach their common population of reproductive-age women. Braided funding means cooperation and resource-sharing within and between systems and organizations. For example, collaboration within and between government agencies and institutes is essential to shift the US policy and programmatic structure to better serve reproductive-age women. Approaches include agencies partnering on notices of funding opportunities, integrating women's health priorities into specific chronic disease-focused funding mechanisms, increasing diversity and experience of grant reviewers, and increasing funding for research and programs that focus on reproductive-age women outside the context of being pregnant. Funding calls should include priorities and strategies identified by the communities most affected by an issue, and funders should more heavily weight proposals developed in partnership with those with lived experience. There is a significant need to move models of coordinated interdisciplinary care from demonstration projects to full implementation. Existing models that are shown to be effective in the management of one chronic disease, such as diabetes, should be tried in the management of others, such as autoimmune diseases. Cancer care models and “tumor boards,” as well as comprehensive high-risk prenatal services, have the potential to be translated to chronic condition care. Lessons learned from the systematic integration of reproductive life planning in primary care settings should be applied to specialty settings. These lessons include how to ask people about their reproductive desires, provide noncoercive contraceptive counseling and method matching, and provide supportive care for those seeking to become pregnant. Public laws and regulations and organizational policies must be established and enforced to make this care possible and scalable. Policy priorities should include reimbursement from Medicaid and private insurers that supports co-location of interdisciplinary care, including primary, subspecialty, and behavioral health care. Reimbursement structures should cover physical and occupational therapists, nutritionists and dieticians, health educators, community health workers, doulas, financial counselors, and social workers as part of routine chronic disease care for reproductive-age women. Financial incentives should support consistent screening for reproductive intentions. Health information systems must be designed to enhance patient-centered interdisciplinary care through record-sharing among all authorized providers and health plans. Practices should be held accountable for providing equitable care. People with lived experience must be included as partners at all stages of development and decision making to ensure that care is aligned with their needs. Providers need to see the patient as an expert in their own body and understand the importance of shared decision making. They must consistently consider the whole person in front of them and the way their systems are interconnected—including their mental, emotional, and economic state of being. Providers must recognize that it is their role to provide the best information possible to their patients in a manner that fully creates space for their autonomous and informed decisions. Providers need to have solid psychosocial skills and those who are challenged with this need to have a well-developed team around them. Patient stories of their experiences living with and through chronic disease could support staff development and enhance knowledge and practice skills. There is a need for better informed and culturally aware and sensitive ways of providing services, particularly to Black women, Indigenous women, and people with female reproductive organs who identify as nonbinary or trans. Care needs to be redesigned in many ways. First, the clinics where people receive care need to be redesigned to create a better sense of welcome, security, and hope. While this will vary based on the patient population served by the clinic, having a board with information about the providers as people and adding images to the walls that are inspiring or reflect local traditions, as well as touches such as lighting and wall colors to create a sense of home and comfort, would help people feel better in the space. Engaging clients in decorating, design of educational materials, and even clinic flow could reap rewards in better care. Clinic staff are also important to include. People on the “front lines” of care often know of problems and have ideas for fixing them, but may also be dismissed. Empowering all clinic staff to suggest and help implement effective changes is one strategy, as is making sure the work environment is affirming for people with diverse identities and supports the physical and mental well-being of staff. Finally, we must shift the way information and education are provided. Patients have identified that the current system of sending test results via a letter or patient portal after a visit without the opportunity to follow up with questions is a problem. People need information tailored to their condition and treatment plan. They want information from their health care team that is honest and factual, delivered with hope and compassion, and that is layered—the basics first, followed by access to more complex and specific information, including research studies. The way educational materials are designed matters—including the delivery format, images used, the tone in which information is conveyed, and cultural norms represented—and all need investment and testing. Clearly, there is much to be done. This work does not rest in the hands of a single specialty group or sector; rather, it requires a collective investment and a sense of responsibility. Improvements in reproductive wellness for women with chronic conditions require an interdisciplinary, intersectional approach. Reducing distrust involves acknowledging histories of injustice that have occurred among women, especially minoritized women and communities “placed at risk,” and dismantling racism, ableism, misogyny, homophobia, and transphobia. Uplifting the lived experiences of our communities can counter and upend oppressive strategies and care. The availability of equitable, quality, coordinated reproductive wellness should not be out of reach for women, and enabling this compatibility requires fundamental change in our current health care system. We need to ensure safe and inclusive health care spaces by reimagining and redesigning systems that put equity and the patient at the center. We need policy change at state and federal levels that eliminates the -isms and strengthens actions toward reproductive equity for women with chronic conditions. We must work to ensure all women have health care that is accessible and affordable, as well as access to clean water, safe, affordable housing and nutritious food, education, income equity, and reliable transportation for medical appointments. There are numerous ways to think about changing our current practices, as outlined in this commentary. Now we must urgently move toward implementation, further research, and more meaningful and intentional conversations that lead to real change. The authors thank the W.K. Kellogg Foundation for their support of Connecting the Dots Part II: Building a Seamless System for Women with High-Risk and Chronic Conditions—Before, Between, and Beyond Pregnancy (P-P3039147-2020).