Menopause Is Missing from Most Electronic Health Records, Undermining Women's Health Research
核心洞察
A University of Colorado Anschutz (搜索) study of nearly 396,000 women in the NIH All of Us Research Program (搜索) found menopause (搜索) appeared nearly seven times more often in participant surveys than in electronic health records.
Menopause (搜索) was documented in EHRs for only about 7% of women, with roughly 193,000 survey observations compared to about 28,000 EHR diagnoses.
A separate scoping review in Menopause (搜索) found menopause remains inconsistently represented in EHRs, reflecting structural documentation gaps that constrain longitudinal tracking and research reproducibility.
Menopause (搜索) is frequently missing from women's electronic health records, according to a University of Colorado Anschutz (搜索) study of nearly 396,000 women participating in the National Institutes of Health's All of Us Research Program. Researchers found that menopause appeared nearly seven times more often in participant surveys than in electronic health records (EHRs), highlighting both the potential of large-scale research programs to improve understanding of menopause and the urgent need to routinely capture reproductive health information.
"Ultimately, we cannot study what we do not measure. We cannot treat what we do not know," said Audrey Hendricks, PhD, associate professor of bioinformatics at CU Anschutz and the study's principal investigator. "Menopause (搜索) has enormous implications for women's health, but if we don't consistently capture when menopause occurs and other important reproductive health information, we limit our ability to understand how this transition affects disease risk and health outcomes."
The Scale of the Data Gap
Researchers compared menopause (搜索)-related information reported by participants through surveys with menopause diagnoses recorded in their EHRs. They identified approximately 193,000 menopause observations in survey data, compared with roughly 28,000 menopause diagnoses in EHR data. Menopause was documented in EHRs for only about 7% of women in the dataset.
Nearly all participants with a menopause (搜索) diagnosis in their EHR also reported menopause in survey data, suggesting that EHR diagnoses generally aligned with participants' own reports when the information was present. However, far fewer women had menopause documented in their electronic health records. Important details about menopause were also frequently unavailable in both EHR and survey data, including age at menopause—an important factor researchers may want to examine when studying women's risk of chronic disease.
Why Missing Menopause Data Matters
Menopause (搜索) is a physiological transition that can affect cardiometabolic health and many other aspects of women's health. Yet relatively little is known about how factors such as the timing and type of menopause influence health outcomes across diverse populations. Missing menopause information can make it more difficult for researchers to study how the menopause transition relates to health and disease.
Large-scale initiatives such as the NIH All of Us Research Program (搜索) offer an opportunity to study those questions by bringing together information from participant surveys, electronic health records, and genomic data. But researchers can answer menopause (搜索)-related health questions using these datasets only when key reproductive health information is available.
"We have an enormous opportunity to use large-scale datasets to understand women's health across the menopause (搜索) transition and to identify who may be at greater risk for disease," said Hendricks. "But we need to make sure that the information researchers need is actually being collected. We must do a better job of capturing women's health information, including reproductive health and measures related to menopause."
Structural Documentation Gaps Across EHR Systems
A separate scoping review published in Menopause (搜索), the journal of The Menopause Society (搜索), reinforces these findings. The review found that menopause remains inconsistently represented in EHRs, reflecting structural documentation gaps that constrain longitudinal tracking, clinical decision-making, and research reproducibility due to heterogeneity.
Approximately 1.3 million US women enter the menopause (搜索) transition each year, with an estimated 1.1 billion women globally classified as postmenopausal. Although menopause is a normal life stage, it is associated with a wide range of symptoms and long-term health consequences affecting cardiovascular, musculoskeletal, neurologic, and mental health systems. Common symptoms—including hot flashes, sleep disturbances, mood changes, joint pain, and genitourinary symptoms—are frequently reported but often inconsistently documented in clinical records.
In routine clinical practice, menopause (搜索) status and symptoms are often inferred from proxy indicators such as age ranges, diagnosis codes, or medication use rather than documented through structured staging approaches. Several validated symptom-assessment tools exist, but these instruments are not routinely incorporated into structured EHR workflows or mapped to standardized clinical terminology. As a result, menopause-related information in EHRs may be fragmented across providers and institutions, limiting longitudinal tracking, care coordination, and secondary use of clinical data for research.
Toward Standardized Menopause Data Elements
The scoping review concludes that the development of standardized menopause (搜索)-common data elements, including structured stage and symptom documentation, will require coordinated, multidisciplinary efforts to improve data quality and support scalable menopause research. The authors conclude that broader standardization and implementation of validated screening tools within EHRs can enhance clinical care by standardizing staging, informing treatment protocols, facilitating early recognition and management of symptoms, enabling assessment of treatment response, and educating patients about modifiable risk factors during a critical period in women's lives.
In addition to the clinical relevance, addressing the menopause (搜索) data gap can also inform research by improving the comparability of treatments and interventions across more homogeneous populations. As the NIH All of Us Research Program (搜索) continues to grow, more complete and consistent collection of menopause and reproductive health information could help researchers better understand how the menopause transition relates to health and disease, and ultimately contribute to better care for millions of women.