Discussion of Policies, Systems, and Structures for Research on Women’s Health at the National Institutes of Health

Proceedings of a Workshop—in Brief

The National Academies of Sciences, Engineering, and Medicine (the National Academies) convened an ad hoc committee with specific scientific, ethical, regulatory, and policy expertise to develop a framework for addressing the persistent gaps that remain in the knowledge of women’s health research across the National Institutes of Health (NIH). It was tasked with analyzing the proportion of funding from NIH that supports conditions that are female specific and/or more common in women or affect women differently, with a goal of determining the level of funding needed to address gaps in women’s health research. The committee was also tasked with developing recommendations regarding the structure of NIH and on the systems and processes needed to ensure optimal funding of women’s health research. To help inform their deliberation process, the Committee on the Assessment of NIH Research on Women’s Health held a hybrid public workshop on January 25, 2024. The discussions included background on the state of women’s health, an overview of NIH processes, programs, and structures related to women’s health, and stakeholder perspectives on research gaps at NIH from members of the public. Several speakers shared suggestions for changes at NIH to advance women’s health (see Box 1). This Proceedings of a Workshop—in Brief summarizes the presentations and discussions expressed during the workshop and should not be seen as a consensus of the workshop participants, the committee, or the National Academies.

STRUCTURAL DETERMINANTS OF HEALTH AT THE INTERSECTION OF RACE, GENDER, AND SEXUALITY

Madina Agénor, associate professor, Brown University School of Public Health, acknowledged the land she was presenting from as the ancestral homeland of the Massachusett and Indigenous people from across Turtle Island, as a reminder of the complex and interconnected histories of populations. She provided an overview of sexual and reproductive health (SRH) inequities and expanded on the social and structural determinants of these inequities and the historical context, saying that SRH is central to people’s overall health and well-being. However, pronounced inequities in outcomes and service use exist among various demographic and social groups, in part due to barriers in access to and use of care. A robust literature demonstrates racialized SRH inequities, she noted, such as Black and Indigenous women being three and two times more likely, respectively, to die of pregnancy-related complications compared to White women. These inequities are also present for sexually minoritized people and transgender or nonbinary people assigned female at birth, although the research remains quite limited. Taken together, these inequities occur

within a larger context, noted Agénor, with barriers to high-quality SRH care including not only lack of insurance or access but also exposure to multiple forms of bias, stigma, and discrimination in health care settings. In addition, outside of the health care system, numerous social inequities, such as food, housing, and employment insecurity; residential segregation; environmental pollutants and toxins; and other factors influence these SRH inequities. She shared a qualitative research study about young people’s experiences that found two key themes (Agénor et al., 2022):

1. Gendered racism undermines access to and receipt of person-centered SRH care.
2. Community support helps prevent harm, validates lived experiences, and ensures bodily autonomy.

These are examples of some of the issues people experience at the intersection of race, sexual orientation, and gender identity. She shared a conceptual framework from the World Health Organization on the social determinants of health (SDOH) that includes structural determinants, which are often left out of such frameworks (see Figure 1). These structural determinants are themselves shaped and reinforced by larger systems of oppression that intersect, including racism, sexism, and xenophobia, and influenced by historical processes, such as slavery and settler colonialism.

Expanding on this framework, she focused particularly on the laws and policies, specifically at the state level, that can promote or challenge racism, sexism, and other forms of discrimination. A growing body of work links U.S. state laws that promote or mitigate structural discrimination to SRH inequities (Jahn et al., 2023). For example, evidence links restrictive abortion laws to higher levels of preterm birth and low-birth-weight babies among Black versus non-Black patients. Research also shows an association of Medicaid expansion with lower rates of maternal mortality, especially among Black patients (Eliason, 2020). Structural discrimination is driven by these laws, she emphasized, within broader contexts of systems of oppression. Newer research has also linked structural sexism at the state level to health outcomes in general, especially SRH outcomes, such as Cesarean sections (Nagle and Samari, 2021). Many of these inequities, she offered, need to be situated within the history of medical exploitation in the United States and around the world, to understand the broader context. These systems are interconnected, and although most of this research has been done in isolation, it is up to researchers and others to take their science to the next level to address the complexities on the ground and further develop the needed evidence to elucidate this intersectionality to advance women’s health research. Ultimately, she concluded, a reproductive justice approach and ensuring bodily autonomy for all are needed.

In response to a question about the sex as a biological variable (SABV) policy at NIH, Agénor noted the need to think beyond only SABV and to think about gender as socially constructed; otherwise, transgender and nonbinary people are not considered in ways they should be, and opportunities to think about other forms of social inequality are missed. She also advocated for community-led research, requiring academic researchers to take a step back to see what supports are needed in the community to address issues in an interconnected way.

EXAMPLES OF RESEARCH GAPS IN WOMEN’S HEALTH

Speakers from various advocacy organizations and nonprofits focused on women’s health shared their priorities for closing the gaps in the research and what can be done to improve the state of the research and eventually improve health outcomes.

Society for Women’s Health Research (SWHR)

Lindsey Miltenberger, chief advocacy officer, SWHR, said that as a whole, women’s health research is underfunded and underprioritized. Despite representing more than half of the population, women are still underrepresented in clinical trials in areas such as cardiology and oncology. SWHR sees a great need to improve understanding of sex and gender differences in disease and the fundamental hormonal drivers of women’s health. For example, she noted, the role of biological sex in autoimmune disease is not well understood, nor is the intersection between pregnancy, bone health, and osteoporosis outcomes. Additional pressing questions include understanding disparities in lung cancer in women, influences of puberty and menarche and their influences on long-term gynecological and overall health, and the impact of menopause on aging and health. Beyond specific conditions, some diseases disproportionately affect women, yet the funding does not reflect that imbalance. For example, Miltenberger shared a 2021 article that found that in nearly 75 percent of cases where a disease primarily afflicts one sex, the funding pattern favors male patients (Mirin, 2021).

She noted that elevating the coordination, collaboration, and accountability of Office of Research on Women’s Health (ORWH) is essential to ensuring that research into women’s health is being taken seriously across NIH. She said that one way to achieve this would be to increase funding to ORWH to improve its ability to be able to administer grants without another Institute or Center.

Women First Research Coalition

Irina Burd, chair, Department of Obstetrics, Gynecology, and Reproductive Sciences at the University of Maryland, and Lisa Barroilhet, associate professor, Department of Obstetrics and Gynecology, University of Wisconsin School of Medicine and Public Health, spoke on behalf of the Women First Research Coalition, which was formed to address pressing challenges in women’s health research. Barroilhet pointed out that policies around SABV are important but distinct from women’s health research, and the two should not be considered inter-changeable. They agreed with Miltenberger that changes are needed to better support women’s health research at NIH. Specifically, Burd called for greater investment for the relevant workforce and examining the grant review process to allow for supporting more meritorious research on these topics. For example, she recommended that every grant application in women’s health have at least one reviewer with relevant specialized expertise; a longer-term solution could include a review branch dedicated to obstetrics, gynecology, and reproductive sciences. Burd agreed that although ORWH has grantmaking authority, it lacks the infrastructure to review and issue grants without contracting with other institutes and centers (ICs), presenting additional funding concerns because of the added cost. She noted that to improve accountability, coordination, and promotion on women’s health topics in all ICs, ORWH will need additional funding and a mechanism for public input.

Burd noted the several networks run by the National Institute of Child Health and Human Development that conduct innovative research (e.g., the Maternal Fetal Medicine Units Network, Contraceptive Clinical Trials Network, Contraceptive Development Program, and the National Centers for Translational Research in Reproduction and Fertility), moving knowledge from bench to bedside—and these structures should be reviewed to optimize their work and find other areas for advancement. Barroilhet and Burd shared specific research topics in the field that would benefit from additional investment, including cervical cancer, endometrial cancer, fibroids and endometriosis, pelvic floor disorders, reproductive health access, reproductive infectious diseases, and menopause.

Women’s Health Access Matters (WHAM)

Lori Frank, incoming president at WHAM, shared some of its recent work, particularly a series of studies released starting in 2020 on the potential impact an increase in funding for women’s health research, specifically downstream socioeconomic consequences. What the study authors found for return on investment across selected conditions was striking, noted Frank, even with conservative assumptions. For Alzheimer’s disease (AD) and AD-related dementias, doubling NIH funding for women-focused research could yield economic returns that exceed $930M; an additional $20M for coronary artery disease research could yield returns of nearly $2B; and an additional investment of $6M could yield over $10B in returns for rheumatoid arthritis (Baird et al., 2021). These results led them to develop three main goals, which can serve as a framework for the committee’s deliberations: (1) double the budget for women’s health at NIH and within the private investment community, (2) improve diversity and access to clinical trials, and (3) mine existing data to expand the evidence base. For the increased funding, WHAM sees value in the investment across the continuum from basic to applied research, focusing on individual therapeutic areas and crosscutting issues. As part of WHAM’s goal for trial diversity, she also reiterated the importance of valuing lived experience and expanding research populations, possibly through decentralized clinical trials. Finally, expanding on its third goal, she highlighted the numerous opportunities for secondary analyses.

A participant highlighted a challenge for NIH is the limited budget, requiring tradeoffs across health areas. Frank challenged the assumption that prioritization in one area equals deprioritization in another, noting that the WHAM report looked at different scenarios and found that benefits accrued to people all across society. Barroilhet added that maternal mortality and morbidity affect every person, not just women, and that this area has the most severe health disparities in the country yet has not been consistently funded.

OVERVIEW OF WOMEN’S HEALTH AND RELEVANT TOOLS AT NIH

Several NIH speakers discussed the focus on women’s health from within their offices, centers, and institutes, and opportunities for growth and improvement with available tools.

Evaluation, Performance, and Portfolio Analysis

Marina Volkov, director of NIH Office of Evaluation, Performance, and Reporting, noted that NIH has 27 different ICs, and each one has an important emphasis on women’s health. To take a more holistic view, she said their programmatic offices look across NIH to see where synergies and gaps lie in women’s health. She shared four goals from the office of Evaluation, Performance, and Reporting: (1) enhance and harmonize strategic planning; (2) optimize progress monitoring; (3) strengthen evaluation and assessments; and (4) disseminate findings with the public, and articulate value of NIH research. They have also developed an internal strategic tracking and reporting tool (START) that ICs can use to enable progress on these goals, reduce staff burden, aggregate data, and increase visibility. The tool also captures other activities NIH undertakes to synergize research in women’s health, such as conferences, symposiums, and data collection for the biannual report on women’s health.

George Santangelo, director, NIH Office of Portfolio Analysis (OPA) within the Division of Program Coordination, Planning, and Strategic Initiatives, shared the OPA mission to accelerate biomedical research by supporting data-driven decision making. His team develops methodologies and tools and disseminates best practices through training programs and other resources that can improve the analytics for data-driven decision making by NIH staff. OPA has a history of publishing its methodologies, said Santangelo, to ensure everyone understands the underlying evidence base for its methods. OPA also publishes the results of analyses that could inform the broader scientific community. He called attention to a preprint on the effect of mentee and mentor gender on scientific productivity for NIH (Yu et al., n.d.), finding that women mentees with women mentors have the greatest level of clinical impact relative to other dyads. He also shared some of the ways OPA uses portfolio analysis to inform decision making across NIH and some internal and public-facing tools used in next-generation portfolio analysis, such as iSearch. OPA is reimagining a new version of iSearch, which was developed in 2015. He highlighted the OPA COVID-19 Portfolio that was

launched in April 2020 in response to the need to aggregate publications for the COVID pandemic (NIH, n.d.-b).

Santangelo described how OPA might approach an analysis of women’s health research in the NIH portfolio: it might start with the Research, Condition, and Disease Categorization (RCDC) System category for women’s health and then often will extend beyond it by using machine learning (ML) and by consulting a group of subject matter experts (SMEs) which is necessary to inform and interpret analytical results. Curated input for the ML approach requires high interrater reliabilities, which indicate that SMEs agree on how to categorize things, he noted. In addition to ML, OPA also develops and uses other artificial intelligence (AI) approaches, such as language modeling. Unlike generative AI algorithms, OPA does not train its model on the entire Internet but instead focuses on capturing all scientific data (much of which cannot be accessed by ChatGPT or other AI tools), spanning the entire biomedical research landscape of almost 40 million publications and nearly 4 million NIH and other grant documents. OPA has also used predictive analytics to develop the Approximate Potential to Translate, an estimate of the likelihood that a paper will be cited in clinical trials or guidelines (Hutchins et al., 2019). Over the past decade, OPA research and development efforts have focused on developing methods to detect and predict transformative breakthroughs. Santangelo noted that although they are unable to name the specific nature of the breakthrough, his team can predict, out of tens of thousands of research areas, the five or six that will produce a breakthrough in the next 2–12 years.

Research Capacity

Michele McGuirl, acting director, Division for Research Capacity Building (DRCB), National Institute of General Medical Sciences (NIGMS), noted that NIGMS provides leadership on behalf of NIH in supporting training of the next generation of scientists and enhancing diversity in the workforce. NIGMS works through research project grants, and, in addition to R01s, has another funding stream to encourage creativity and innovation: Maximizing Investigators’ Research Awards, also known as “R35s.” These 5-year awards enable a principal investigator to adapt to important new research directions as opportunities arise, rather than being bound to specific aims. After analyzing this mechanism, they found that men and women are both doing well in peer-reviewed application scores, she said. Sharing some updates from their training, workforce development, and diversity programs, McGuirl also highlighted the MOSAIC program. Focused on enhancing diversity of faculty in research-intensive positions, it has 23 participating institutes, and 75 percent of scholars are women. She also reviewed how women’s health research is supported through the Institutional Development Award program within DRCB, which supports research across NIH while building capacity in states and territories that do not receive large amounts of NIH funding. The NIGMS IDeA program has offered administrative supplements to encourage research in women’s health, funding an average of 20 awards per year for the past 3 years, with support from 15 other NIH Institutes, Centers, and Offices (ICOs). McGuirl explained how this program led to a partnership with the ORWH to request proposals in the area of women’s health for new IDeA Centers of Biomedical Research Excellence (COBRE). Three awards are expected in FY24. COBREs build capacity by establishing a center of excellence that helps develop a critical mass of independent investigators. It represents a long-term commitment to help them continue research in underfunded areas, such as women’s health, she added. COBRE grants are centered on a particular scientific theme, consist of three 5-year awards, and produce 10–15 independent investigators. Every state has at least one COBRE, she explained, and most institutions have multiple awards in different scientific areas. The SuRE and SEPA capacity-building programs support individual PIs and several address women’s health topics (NIH, 2024a, 2024b).

Disease Categorization and Analysis

Evelina Cebotari, lead scientific information analyst, NIH Division of Scientific Categorization and Analysis (DSCA), Office of Extramural Research, provided background on the RCDC, the history of and methodologies used by it, and some public tools available. DSCA curates and maintains the RCDC categories with the assistance of stakeholders from NIH ICOs. RCDC was developed as a requirement of the NIH Reform Act of 2006 to uniformly categorize NIH research grants and activities. RCDC is the official source of categorical reporting for NIH. The categories are created through an automated process

using a centralized thesaurus with a hierarchy of concepts, using feedback from ICOs. She explained that this curated thesaurus forms the basis of the RCDC system and is refined annually as science evolves. It is organized hierarchically, with synonyms and broader and narrower terms, to provide structure and account for terms that can be used interchangeably. Project text is extracted from applications, mined and processed, and matched against the RCDC thesaurus, and concepts are identified. The number of times relevant concepts are used in a project determine where it is categorized. Over time, the RCDC process has been standardized, including increased data quality checks, incorporating advancements in ML to improve the accuracy of categories. She added that it is important to note that no budget is set for each RCDC category; they only report what is funded.

Nancy Praskievicz, lead scientific information analyst, NIH DSCA, Office of Extramural Research, explained that more than 300 categories are reported on the spending page, with several new ones added each year. The RCDC category request process can begin with either IC interest or congressional language or policy. Then, a working group within NIH decides whether the topic should go through the official category creation process, which involves gathering information and ICO stakeholder feedback. In addition to creating and maintaining categories, the RCDC system also allows for analyzing NIH appropriations, identifying trends and gaps in research funding, and visualizing various themes. RePORT is the public-facing site that provides access to NIH Categorical Spending data and tools, such as RePORTER, the RCDC Inclusion Statistics Report, and the NIH Data Book. Praskievicz described how users can analyze spending in a certain topic, such as women’s health, look at projects of interest, and find information relating to publications or clinical trials specific to an award.

Jake Scholl, lead scientific information analyst, NIH DSCA, Office of Extramural Research, said there are internal tools that NIH staff use to analyze the RCDC categories. He noted that improvements to the automated reporting process and new ML tools allow DSCA to see trends over time. For example, he noted, Opioid Misuse and Addiction was not a category until recently, but using this internal process, they are now able to go back and see how investment in this area has changed as it grew in importance.

Another participant highlighted the challenge of each grant being classified in multiple categories within the RCDC system; although NIH speakers acknowledged that this makes calculating spending in various areas more difficult, they also noted that categorizing thousands of grants manually each year would be a large burden and introduce inconsistencies in data. While there are multiple methods to attributing portions of funding to different subject matter areas, no clear and simple process that could be implemented was identified.

NIH Center for Scientific Review Policies and Procedures

Kristin Kramer, director, NIH Office of Communications and Outreach, Center for Scientific Review (CSR), explained that their mission is entirely centered on peer review and seeks to ensure fair and independent scientific review for all grant applications. Last year, CSR reviewed about 60,000 grant applications, she said. CSR makes two assignments—to a study section or special emphasis panel for the first level of peer review and then to a funding institute for a second level of review and funding decisions. They also want to ensure an appropriate level of competition, keeping similar applications grouped together. The number one reason for withdrawal of a grant submission, she clarified, is that someone expected it to be assigned to a funding institute that does not participate under that particular Notice of Funding Opportunity. During a study section review, the top 50 percent of applications are discussed, and all get three written critiques, with most applications receiving a percentile score, helping to normalize scores across study sections. Focusing on the issues of scope and process, Kramer said that they launched a formal evaluation called “ENQUIRE”—a systemic, data-driven process to evaluate all study sections at CSR. Through this program, they seek to evaluate 20 percent of the panels annually so that every panel is reviewed at least every 5 years. She also described their process for rereview, integrity issues, bias, and diversity of reviewers. Last, she briefly discussed funding decisions, noting that the priority score is not the sole determinant for funding; ICs vary in how they make decisions about which grant applications to fund. In the second stage of review, the assigned IC con-

siders the outcome of peer review and the IC’s mission and priorities, and the director makes the decision. Different ICs also have different funding rates. For example, in 2023, the success rate for R01s at NCI was 14.6 percent, but it was 19.8 percent at NHLBI (NIH, n.d.-a). In closing, she mentioned a new effort aimed to simplify review and reduce the burden, taking effect for applications beginning in January 2025. She explained that two current Additional Review Criteria are being folded into Factor 2 (Rigor and Feasibility): timeline for clinical trials and inclusions (e.g., women, minorities, and across the life-span) for human subjects research.

In response to concern about the representation of women’s health expertise within review committees, Kramer emphasized that the scientific review officer does not unilaterally decide on membership for standing panels but follows a structured nomination and evaluation process to ensure requisite expertise and diversity along multiple dimensions (e.g., geographic, career stage, gender, race, ethnicity). This process is aimed at maintaining a balanced and comprehensive review mechanism that can adeptly handle submissions across varied topics, including women’s health. Kramer also mentioned efforts to address potential biases within the review process, including bias awareness training for reviewers, which aims to strengthen review outcomes and improve NIH’s ability to identify the highest-impact research.

Sexual & Gender Minority (SGM) Research Office and the National Institute on Minority Health and Health Disparities (NIMHD)

Karen L. Parker, director, NIH SGM Research Office, began by describing the size of the SGM population, as it is often said that it is a small, niche group, which is not the case. Highlighting a 2022 Gallup poll, she noted striking differences across generations (see Figure 2); this population is growing and needs to be considered in future research. Parker explained that her office does not have grantmaking authority but coordinates on relevant SGM health research across NIH.

Sex and gender are distinct categories, she noted; sex is a biological construct, gender is a social construct, and neither are binary. One of the biggest challenges in research is that people use these terms interchangeably, she said, but not everyone fits cleanly into binary male or female categories. Sexual orientation also exists on a spectrum and can change over time, which can impact how these indicators and demographics are measured in studies. SGM women face unique inequities and disparities, noted Parker, and workforce data indicate barriers in science, technology, engineering, and mathematics fields, including harassment, career advancement opportunities, and less access to necessary resources (Cech, 2022; Cech and Waidzunas, 2021). To focus on the challenges at NIH, she noted that many are structural, including a dearth of research focusing on SGM women, lack of adequate and accurate data collection, the SABV policy that reinforces sex as a binary construct, and NIH inclusion policy and reporting, which enforces gender as a binary construct.

Eliseo J. Pérez-Stable, director, NIH NIMHD, reiterated comments on the nuance of gender identity. He noted that populations with health disparities include racially and ethnically minoritized people, underserved rural residents, sexual and gender minorities, and people with disabilities. All of these populations are subject to discrimination and also underserved in health care, he said. Within NIMHD, research priorities include holding race and ethnicity and socioeconomic status (SES) as fundamental drivers of health disparities, focusing on intersectionality of race and ethnicity and SES with rural populations, disabilities, and other factors, and moving away from using the White population as a reference group. The FY2023 NIMHD budget was $525 million, with nearly half spent on research grants. Other funds support congressionally mandated programs related to chronic disease research centers, research endowment, and Research Centers for Minority Institutions. In terms of priority conditions, Pérez-Stable said that some affect all minoritized populations, with men and women equally

impacted, such as diabetes or cardiovascular disease. Yet others disproportionately affect women, including interpersonal violence, dementia, and maternal mortality. In closing, he emphasized that patient–clinician communication really matters, with good communication directly linked to higher patient satisfaction and improved health outcomes. Health care is an important context with numerous levers to focus on to improve health, he noted, and opportunities exist through expanded access, better coordination of care, and increased patient-centered care.

STAKEHOLDER PERSPECTIVES

As part of the public session, the committee invited interested groups and patients to share their perspectives, including lived experiences, on gaps in women’s health research, particularly across NIH ICs. Five participants shared their priorities, summarized in this section.

Nazema Siddiqui, a clinician-scientist and urogynecologist at Duke University and board member for American Urogynecologic Society (AUGS), emphasized the importance of understanding and evaluating conditions women face throughout their lives, including those that are more prevalent in postreproductive years. For example, one in four women will struggle with some kind of pelvic disorder, she said. More than 50 percent of women over age 65 suffer from incontinence, and one-third of postmenopausal women have recurrent urinary tract infections, which can significantly impact their daily life. Yet, research in female-specific conditions is severely underfunded, and much of the support goes to research focusing on reproductive-age women. Women’s health care should encompass the full life-span, she argued. A common theme from the AUGS network is that reproductive science and noncancerous gynecological conditions receive far less attention and funding than they deserve. Last, she emphasized the role of K-awards from NIH in protecting surgeons’ time and fostering important research questions when the clinical mission is typically prioritized from an organizational standpoint.

Marlene Berke, speaking from a patient perspective, shared issues related to chronic vulvar and vaginal pain, which can encompass numerous conditions. She described the difficult process she went through trying to seek a diagnosis for her own symptoms and then trying every off-label treatment available. But with little research on the condition, few options existed to improve her quality of life and reduce the pain. Because of the lack of recognition and understanding of these conditions, she said, it is not a surprise that up to one-third of female chronic pelvic pain patients develop major depression. Barriers to care are so severe that a vulvar specialist she saw expressed that these conditions tend to affect high-achieving White women, based on the demographics of their patients. But this is wrong, she noted, and just reflects the inequities in diagnosis and care for these conditions. Sharing several stories of patients about their immense daily pain and debilitating conditions, Berke underscored the severity of these conditions and urged additional research funding be put toward solving them.

Maria Uloko, a urologist and sexual medicine specialist, spoke from the perspective of the medical advisory board for Tight Lipped. She reinforced the stories of women struggling with vulvar and pelvic pain that Berke highlighted, noting the general lack of understanding of women’s bodies in how clinical medicine is practiced. She shared a letter from more than 800 patient advocates and 330 medical providers and researchers that calls for including chronic vulvovaginal and pelvic pain as priority areas of focus. On average, people struggling with these issues require at least three doctor visits before getting a diagnosis, she explained, and 35 percent can see up to 15 doctors before finally being diagnosed. Treatment is equally poor, with just 30–60 percent having some level of success. She also highlighted the low allocation of funding given to these types of conditions, amounting to only 33 cents per person despite affecting 1 in 4 women.

Heather Guidone, program director at the Center for Endometriosis Care, said that knowledge and research gaps continue to persist in women’s health ranging from limited funding to underrepresentation in clinical trials. Women’s research efforts should reflect the vast intersectionality and diversity of women’s experiences to achieve equity. NIH can also continue to build capacity by enhancing curricula and training for gender-specific topics and ensuring reviewer diversity. Endometriosis-specific efforts should be elevated to a public health and research priority,

she said. Translational research with findings that can be widely applied to improve clinical outcomes also needs to be prioritized and increased. She concluded that addressing structural sexism, gender norms, relational power dynamics, and funding disparities among these types of diseases is a rising tide that lifts all boats.

Katherine Roe, from the Laboratory Investigations Department at the People for Ethical Treatment of Animals, agreed that funding for women’s health research has historically been inadequate. Although more female animals have been included in experimentation to rectify this, this has severe limitations and does not produce tangible treatments for humans, she argued. Overreliance on animal models for research on diseases such as AD (Cummings, 2014; Pistollato et al., 2016) and cardiovascular disease (Liao, 2017; Zaragoza, 2011) results in a high failure rate of treatments and a lack of new drug candidates. She shared concern that some of the limited funding of women’s issues is being used on animal models when that approach will not yield the answers researchers are looking for. For example, she said, NIH is funding menopause experiments on marmoset monkeys, even though they do not experience menopause or have a sex hormone response similar to humans (Abbott et al., 2003). She urged prioritization on sex-, gender-, and race-inclusive research based in human biology.

Many of the virtual meeting attendees also submitted comments throughout the meeting, and National Academies staff read many of these to close out the workshop. Topics included the importance to focus on specific conditions, including endometrial cancer, premenstrual dysphoric disorder, female sexual health, and menopause. Others noted specific considerations for research, including lived experiences, inclusion of people with disabilities in research, occupation and work-related factors, and other SDOH. Specific issues around the NIH grant review process and workforce were also raised.

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DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by Megan Snair as a factual summary of what occurred at the meeting. The statements made are those of the rapporteur or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

*The National Academies of Sciences, Engineering, and Medicine’s consensus study committee on the Assessment of NIH Research on Women’s Health is solely responsible for organizing this workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop—in Brief rests with the institution.

MEMBERS OF THE COMMITTEE ON THE ASSESSMENT OF NIH RESEARCH ON WOMEN’S HEALTH Sheila P. Burke (Cochair), Harvard University; Baker Donelson; Alina Salganicoff (Cochair), KFF; Neelum T. Aggarwal, Rush University; Veronica Barcelona, Columbia University School of Nursing; Alyssa M. Bilinski, Brown University; Chloe E. Bird, Tufts Medical Center; Susan Cheng, Cedars-Sinai Medical Center; Felina Cordova-Marks, University of Arizona; Sherita H. Golden, Johns Hopkins Medicine, Holly A. Ingraham, University of California, San Francisco; Robert M. Kaplan, Stanford University; Nancy E. Lane, University of California, Davis Health System; Jane E. Salmon, Hospital for Special Surgery; Cornell University; Crystal Schiller, UNC School of Medicine; Angeles Alvarez Secord, Duke University Health System; Methodius G. Tuuli, Brown University; Women & Infants Hospital; Bianca D.M. Wilson, University of California, Los Angeles.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Tracy Madsen, Brown University; Lindsey Miltenberger, Society for Women’s Health Research; and Bianca Wilson, University of California, Los Angeles. Leslie Sim, National Academies of Sciences, Engineering, and Medicine served as the review coordinator.

SPONSORS This Project has been funded in whole with Federal funds from the Office of Research on Women’s Health, National Institutes of Health, Department of Health and Human Services, under Contract No. HHSN263201800029I, Task Order No. 75N98023F00005.

STAFF Amy Geller, Study Director; Aimee Mead, Program Officer; Luz Brielle Dojer, Research Associate; Maggie Anderson, Research Assistant; Rachel Riley, Senior Program Assistant.

For additional information regarding the workshop, visit https://www.nationalacademies.org/event/41691_01-2024_assessment-of-nih-research-on-womens-health-meeting-2-part-3.

SUGGESTED CITATION National Academies of Sciences, Engineering, and Medicine. 2024. Discussion of policies, systems, and structures for research on women’s health at the National Institutes of Health: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/27802.