Menopause is a major health milestone, yet health records barely track it – new research

Anyone with ovaries who lives long enough will experience menopause. While menopause is a natural transition in midlife, it can strongly affect a person’s quality of life and their current and future risk of heart disease, osteoporosis and other issues. So you might think that whether someone is experiencing or has gone through menopause would be noted in their medical records.

But when we and our colleagues examined the electronic medical records of almost 240,000 women, only 12% included mention of menopause, even though more than half the women reported separately that they were experiencing this transition. Our findings, published in the journal Menopause, reveal a major gap in how clinicians capture basic information about women’s health.

The menopausal women we examined are from a broader group of 400,000 who participated in the All of Us Research Program, a nationwide study run by the National Institutes of Health to compile a wide range of health data from at least 1 million Americans. We looked at how information about menopause was included in electronic health records and how this information differed by demographics, such as age, education, race and income.

Because study participants filled out health surveys upon enrolling, we could track discrepancies between their own reports of menopause and what was in their medical records. Age at menopause and symptoms, such as hot flashes or sleep disturbances, were also largely missing from the medical records and survey.

Missing links

Many aspects of menopause, and the diversity in women’s experiences with it, remain poorly understood.

For example, when menopause begins, as well as how disruptive its symptoms are, can vary greatly. Some women experience extreme hot flashes, sleep disruptions and brain fog, while others do not. One woman may go through natural menopause at age 45, and another at 54. Both ages would be considered normal, but that timing can affect current and future health in distinct ways.

Electronic medical records offer an unmatched opportunity to investigate these knowledge gaps, enabling researchers to study the experience of hundreds of thousands or even millions of people using routinely collected data.

Such large-scale studies may shed light on how menopause symptoms change over time and who is more likely to experience them; how markers of heart disease, bone health or mental health track with menopause; how social determinants of health, such as ethnicity and access to healthcare, affect someone’s lived experience of menopause; and countless other unanswered questions.

Closing the data gap

Our study is not the first to point out how inconsistently menopause status and symptoms are recorded in healthcare settings and electronic health records. But it systematically highlights the enormity of the gap, showing that menopause is often not even recorded at all.

It’s not clear why menopause is so rarely documented in electronic health records. It may be because menopause is not a disease, so it does not generally occur to clinicians to note it as a diagnostic code. It may feel obvious or irrelevant to diagnose or measure. It’s possible that patients themselves often don’t bring it up unless their symptoms are severe. Healthcare providers routinely ask middle-aged patients about their reproductive health – for example, when they had their last menstrual period – but this information rarely ends up getting documented in the electronic health record.

As we see it, not capturing this information is a colossal missed opportunity to drive vital research and improve personalized healthcare. Our team is developing a short, simple questionnaire about menopause status and symptoms for patients to fill out as they check in for medical appointments. These responses could then be added to their medical records for use by both their healthcare team and researchers. We are also developing a computer-based approach to infer menopause-related information from other data in a woman’s health record or genetics.

Finally, we are exploring the All of Us dataset to identify systematic differences – for example, in patients’ cultural background or income level, specific health system practices, urban versus rural settings – that might be linked with whether menopause data gets recorded in medical records. These associations can point to targeted ways to encourage its collection.

It’s impossible to research, and treat, what’s not measured. Capturing the menopause transition is an essential step to improving healthcare for women in midlife.