The National Heart, Lung, and Blood Institute (NHLBI), of the National Institutes of Health (NIH), hosted a virtual workshop on December 16–17, 2021, to address an overarching need for the development and support of continuum-of-care models that will advance the health of racially and ethnically diverse women of reproductive age with chronic conditions and multimorbidity. To address these common co-occurring conditions, the workshop brought together various experts and stakeholders to help find a path towards a continuum-of-care approach that integrates primary care, reproductive health, behavioral health, and cardiopulmonary specialties to fully address health in each of these domains and have the greatest impact on the health of racial/ethnic women who are at highest risk for lifelong chronic health conditions. The workshop addressed current gaps and opportunities related to the implementation and adoption of an integrated set of evidence-based practices delivered across health care systems, including primary specialty behavioral health and community-based health care settings. More than 800 people registered for this workshop, which is archived on NIH videocast at Day 1 and Day 2.
Experts—including researchers, clinicians, community and federal partners—presented the current state of research and critical gaps that need to be addressed to accelerate the adoption of models that integrate clinical and population health within well-coordinated, data-driven systems of care. They discussed community-based participatory research (CBPR) as a necessary approach to advance implementation science and evidence-based practices (EBPs) related to multimorbidity. The workshop participants highlighted how an integrated set of EBPs delivered across primary or specialty health care and behavioral health care within community-based settings can accelerate care models designed to address women’s health care needs across the lifespan. Discussions centered around models to improve outcomes by providing targeted services for comorbid conditions with high prevalence among women—such as coronary heart disease and other cardiovascular diseases, asthma, sleep-disordered breathing, pregnancy-related morbidities, chronic pain, substance use disorders, sexual and other violent assault, intimate partner violence, post-traumatic stress disorder, depression, anxiety, bipolar disorder, and other psychiatric orders.
Watch the Videocast
- Videocast Day 1: https://videocast.nih.gov/watch=44319
- Videocast Day 2: https://videocast.nih.gov/watch=44321
Chronic conditions are highly prevalent in the United States, with 6 in 10 adults having one and 4 in 10 having two or more diseases (comorbidity or multimorbidity). Chronic conditions are the leading causes of death, disability, and health care costs in the United States. Although chronic conditions can affect anyone, they are more prevalent among girls and women, individuals older than age 65, those living at the poverty level, and members of particular racial and ethnic groups. According to sex-disaggregated data from the Centers for Medicare & Medicaid Services (CMS), some chronic conditions are more prevalent among women including hypertension, arthritis, depression, Alzheimer’s disease/dementia, osteoporosis, and asthma. Puberty, peripartum, and menopausal transitions are vulnerable periods for women and can be associated with the emergence of chronic conditions. Research has found multiple factors contributing to health disparities for women and girls, such as access to quality healthcare, multiple underlying chronic conditions, structural racism, and implicit bias.
There is also concern about increasing rates of mental health and substance use disorders (e.g., adolescent major depressive episodes, suicide rates, and alcohol-related emergency department visits) among girls and women, with negative effects on health (e.g., alcohol-associated liver diseases, age-adjusted death rates related to cirrhosis, and overdose deaths). Rising rates of anxiety and depression among U.S. women are acting as important drivers of the sharp increases in harmful alcohol and substance use and may be related to increases in overdose-related deaths seen particularly in women of reproductive age. Over the past 2 decades, overdose deaths among women has increased by 400%, and the opioid crisis has disproportionately affected racial/ethnic women. The intersection of these co-occurring conditions may particularly impact maternal health across pregnancy and childbirth such as increasing the risk of pre-eclampsia and conditions beyond pregnancy such as postpartum depression.
Chronic conditions and multimorbidity require complex interventions (both prevention and treatment) and clinical support. Integrated care that addresses the whole person across the lifespan—including the social determinants of health (SDOH) that affect health and the ability to access medical services—is a path towards prevention and treatment of chronic conditions and multimorbidity among women. However, for the most part, the U.S. health care system is fragmented and focused on individual disease management without consideration of the SDOH, intersectionality, and related complexities of multiple health conditions.
The NIH recognizes women’s health and public health challenges across the lifespan (including chronic diseases) as major cross-cutting themes. The objectives of this workshop align with the National Institutes of Health’s (NIH) 2021–2025 Strategic Plan and the 2019-2023 Trans-NIH Strategic Plan for Women’s Health Research. The NIH Office of Research on Women’s Health (ORWH) offers a multidimensional framework for addressing the complex intersection of factors—from biological variables to policies and SDOH—that affect the health of women. To promote rigorous research, NIH has outlined its expectation that the studies it funds consider sex as a biological variable in research designs, analyses, and reporting (including disaggregating data by sex). The NHLBI’s Strategic Vision describes the Institute’s approach to research on diseases of heart, lung, blood, and sleep—including chronic conditions such as asthma, pulmonary fibrosis, chronic obstructive lung disease, and heart failure. Overarching objectives in this Strategic Vision include investigating factors that account for differences in health among populations (such as differences between women and men, and among people of various racial and ethnic backgrounds). This workshop addressed these major themes and innovative ways to leverage existing federal, state, and local resources and collaborations for aligning community and clinical services with the goal of addressing multimorbidity in women across the lifespan. Presentations highlighted a need for ongoing education/training in integrative health care and coordination of healthcare services to meet the health and social needs of racial/ethnic underserved women of reproductive age.
Discussion and Emerging Themes
The workshop provided the NHLBI with information regarding research gaps and opportunities for advancing community adoption and implementation of sex/gender-relevant, evidence-based prevention and treatment interventions for chronic conditions over the continuum of care, with particular attention to women from underserved communities. Participants presented the rationale for integrated care and impact of chronic conditions on women, discussed models and examples, and identified the necessary supporting policies and infrastructure. Workshop presenters also reviewed the essential components of integrated health care systems (e.g., surveillance, screening and brief interventions [SBIs], and incorporating treatment for behavioral health disorders into primary care). Discussion also focused on implementation of these essential components in health systems and the community—with examples related to integrative medicine and mind-body practices, childhood obesity and diabetes, maternal morbidity, and indigenous communities. Experts outlined models of integrative approaches across the continuum of care—highlighting challenges and successes. Some examples discussed related to substance use disorders and HIV, improving outcomes for people returning to the community from incarceration, and linking the criminal justice system with health and other services. Finally, workshop experts identified infrastructure elements (e.g., community engagement, policy, financing, and workforce development) for building integrative care systems that meet the needs of diverse women across the lifespan.
The workshop presentations and discussions centered around the following key topic areas:
- The current funding and research landscape in integrative care models for women and girls from high-risk and medically underserved communities
- Integrative care needs to focus on the whole patient across the lifespan
- The need to change education and training, and to bolster and diversify the workforce to support high-quality integrative women’s health care
- To build a community of trust, women need to be present in these models and data was presented for the lack of women in senior research and health care leadership positions (e.g., full professor, division heads, chief executive officers of hospitals and health systems) despite their overrepresentation as healthcare workers and care providers
- Implementation and implementation science are key to adoption of innovative models in women’s health
- Adapting interventions in the COVID-19 era and lessons learned to serve high-risk and vulnerable women across the lifespan
- Health Information Technology (HIT) expansions and advancements to support integrated care systems
Research Opportunities and Critical Gaps:
The workshop participants identified a number of knowledge gaps and research opportunities:
- Funders have an opportunity to promote integrative care to improve the health of women by (1) optimizing training, mentorship, and career development pathways; (2) enhancing diversity, inclusion, and equity in research; and (3) optimizing community engagement, involvement, and support through research partnerships.
- Evaluation of the success of medical services brought to the community. Such services (e.g., van-based care) occur in some places, but could be scaled up. Providing care outside of the clinic building could expand access to care and overcome the barriers faced by many patients (e.g., lack of transportation).
- Examine approaches for cost-effective integrated systems for managing chronic conditions and comorbidity such as:
- Low-cost screening for risk factors (need efficient algorithms for constructing risk profiles).
- Low-cost, precise targeting of intervention (although efficiency can often be gained by compromising on precision); and
- Highly effective intervention (for the targeted population).
- Research that addresses chronic conditions outside of current treatment “silos”, there are opportunities to:
- Implement sex- and gender-based research and education in all health professions
- Promote the whole-person perspective and understanding that chronic illnesses are interrelated; and
- Adopt the life course perspective (e.g., childhood SDOH and exposures affect later health).
- To reengage women in postpartum care or leverage the well-child visit for a point of interaction for women, which has high attendance rates. Another strategy is to expand research in postpartum care to evaluate this period and its importance for women’s long-term health outcomes
- Can offering care and support to women with chronic conditions and multimorbidity in nonmedical settings enhance receipt and engagement?
- Will expanding the capacity of nonmedical settings to provide integrated services improve the health of women with chronic conditions and multimorbidity? Such settings include community health centers; Special Supplemental Nutrition Program for Women, Infants, and Children programs; pharmacies; reproductive health centers; carceral care systems; foster care systems; and social services offices.
- Could international examples from low-resource settings and the research literature on community health workers and other paraprofessionals (e.g., peer recovery coaches or navigators) inform successful outreach programs for high-risk and medically underserved women and girls?
- Can these paraprofessionals help bridge the gap for individuals who need more intensive services but are not quite ready to engage in formal care within a health care system?
- Can the contributions of community health workers, patient navigators, peer counselors, and other paraprofessionals improve the health care delivery systems—especially for chronic conditions and advancing care for women across lifespan?
- What is the optimal location and who are the optimal professionals to administer screening assessments by measuring their influence on outcomes and determining whether efficiencies are realized?
Jennifer E. Johnson, Ph.D., Michigan State University
Geetanjali Chander, M.D., M.P.H., John Hopkins School of Medicine
Trans-NIH Organizing Committee*
Laurie Donze, Ph.D., NHLBI
Keisher Highsmith, Dr.P.H., National Institute on Drug Abuse (NIDA)
Marrah Lachowicz-Scroggins, Ph.D., NHLBI, Planning Committee Chair
Tamara Lewis Johnson, M.P.H., M.B.A., National Institute of Mental Health
Holly Moore, Ph.D., National Institute on Drug Abuse
Deidra Roach, M.D., National Institute on Alcohol Abuse and Alcoholism (NIAAA)
*Members of the Trans-NIH Work Group on Addressing Common Comorbidities in Women and Girls (ACC)
Workshop Speakers/Moderators in Order Listed in Workshop Agenda
George Koob, Ph.D., NIAAA
Janine Austin Clayton, M.D., FARVO, Office of Research on Women’s Health (ORWH)
Sarah Temkin, M.D., ORWH
Melissa Simon, M.D., M.P.H., IPHAM, Northwestern University Feinberg School of Medicine
Kim Templeton, M.D., University of Kansas Medical Center
Camille A. Clare, M.D., M.P.H., SUNY Health Sciences University
Adam Wilk, Ph.D., Emory University
Amy Board, Ph.D., Centers for Disease Control and Prevention
Steven Ondersma, Ph.D., Michigan State University
Jennifer Johnson, M.D., Michigan State University
Darshan Mehta, M.D., M.P.H., Harvard Medical School
Lauren Fiechtner, M.D., M.P.H., Harvard Medical School
Lisa Masinter, M.D., M.P.H., M.S., Alliance Chicago
Rachel Chambers, M.D., M.P.H., Johns Hopkins University
Geetanjali Chander, M.D., M.P.H., Johns Hopkins University
Sherry McKee, Ph.D., Yale Medical School
Faye Taxman, Ph.D., George Mason University
Caitlin Cross-Barnet, Ph.D., CMS
JaWanna Henry, M.P.H., Office of the National Coordinator for Health Information Technology (ONC)
Ryan D. Argentieri, M.B.A., ONC