Closing the menopause data gap

Associate Professor Robin Austin recently launched the podcast Midlife: Unmasked after growing frustrated with the lack of reliable information about common experiences in midlife, like menopause.

Menopause symptoms vary significantly, from hot flashes and brain fog to muscle pain and mental health concerns. Most research has focused on the physical symptoms.

Currently, documentation of menopause symptoms in electronic health records often lacks a whole-person perspective. This approach does not capture the patient experience and leads to data gaps and a limited understanding of the effectiveness of interventions.

“Incorporating a holistic perspective, such as a whole person approach, can provide deeper insights into managing menopause symptoms, addressing disparities in menopause care, and ultimately improve the quality of life for adult women,” says Associate Professor Robin Austin, PhD, DNP, DC, NI-BC, FAMIA, FAAN.

She recently led a study to identify validated menopause system checklists and map those to Omaha System signs/symptoms terms. 

“The study lays the groundwork for creating a more standardized, data-driven approach for assessing menopause symptoms,” says Austin.

Austin used the Omaha System standardized terminology because of its comprehensive whole-person perspective across the four domains of health — environmental, psychological, physiological and health-related behaviors. The study found it’s feasible to map and synthesize menopause symptoms checklist items using the Omaha System. 

Austin plans to conduct future research to develop a standardized menopause clinical guideline using the Omaha System with corresponding SNOMED CT codes to move toward a comprehensive standardized menopause guideline that supports shareable and comparable data.

“A standardized checklist will streamline clinical documentation and ensure high quality structured data for research and care,” says Austin, who completed the research during a two-year Research Mentorship Program through the Menopause Society.

While awareness is growing about the long-term effects of menopause on cardiovascular, brain, bone, muscle and joint, and metabolic health, stronger population-level data is needed to guide both research and clinical care.

The need for high quality structured data is even more pressing as artificial intelligence gains popularity.

“AI tools and algorithms are only as good as the data they are trained on. Essentially, as AI tools are being built, we need quality menopause data to be representative of the population — midlife women — and accurate,” says Austin.

Launching Midlife: Unmasked

Austin’s interest in midlife women’s health isn’t just professional. It’s personal, too. She recently launched the podcast Midlife: Unmasked after growing frustrated with the lack of reliable information about common experiences in midlife, like menopause.

One of Austin’s motivations came from seeing how long it takes for research to reach the public. “It takes 17 years for research findings to make their way into clinical practice, and into the hands of the general public,” she says. “By sharing conversations with colleagues who are doing amazing research, I hope to shorten that cycle and give individuals practical information they can use to improve their health and wellbeing.”

She also wanted to create a bridge between nursing research and the public. Too often, Austin noted, important work is published in journals or presented at conferences but is slow to reach the broader community. “We have amazing colleagues doing incredible work, even just within our school, and it needs to get out more broadly,” she says. “My friends often tell me, ‘I want to know that stuff.’ That was another impetus for starting the podcast — making sure valuable insights don’t stay locked away.”

In November, Austin will also join an interdisciplinary panel at the AMIA Annual Symposium, focused on advancing women’s health through data science. As she explains, “It’s important that we begin to close the gap in menopause data and move us toward a population health approach to improve midlife women’s health.”