The interoperability gap in women’s health
Three years ago at FHIR DevDays we launched Women for FHIR with a simple, slightly uncomfortable question:
FHIR was largely created by men. Can it fully support women’s healthcare?
If interoperability is meant to improve care for everyone, women’s health cannot remain a blind spot. And yet, when we looked closer, that is exactly where a gap became visible. That question quickly became concrete: how do we represent menstrual health (and the menstrual cycle) in FHIR in a way that is clinically meaningful and reusable?
Last year, Prof Talat Uppal, Director at Women’s Health Road, was the perfect person to ground that discussion in reality. In her keynote, she focused on heavy menstrual bleeding, a condition affecting roughly a quarter of women of reproductive age, and highlighted how under-recognized and under-treated it still is. She brought urgency, clarity, and a very specific use case: if we want better care, we need better structured information.
Together, we worked on two practical instruments: a self-awareness questionnaire to help women recognize when their bleeding may be abnormal, and a referral questionnaire to support GPs in collecting the right information before referring to a gynecologist. It was a powerful way to make a tangible contribution, and at the same time test whether FHIR is capable of representing this data in a consistent, interoperable way.
The conclusion was encouraging: FHIR can store this data. But storing data is not the same as interoperating. To close this gap, we need clear guidance – a shared FHIR profile or implementation guide, so apps, wearables, EHRs, and clinical systems represent and exchange this information in the same way.
Defining the next step with growing momentum
After DevDays, the conversation didn’t stop. I continued the Women for FHIR journey with a broader focus on menstrual cycle data. The energy from the event made one thing clear: there is real interest, real support, and real recognition that women’s health data deserves better interoperability. But turning that support into standardization requires something essential: confidence that the data will actually be used.
If we want to invest time and effort into developing a FHIR profile or implementation guide, we need clear clinical relevance and credible use cases. So I started asking those questions more directly.
Gynecologists consistently confirm that menstrual cycle information is valuable in clinical practice. When treating women, whether for bleeding disorders, fertility questions, hormonal issues, or broader health concerns, understanding cycle patterns provides important context. Clinicians want to see this data. They simply don’t receive it in a structured, interoperable way.
At the same time, one thing stood out immediately: the data exists already in consumer apps and wearables. On the consumer side, menstrual cycle data is already being tracked. Women are logging symptoms, flow patterns, cycle length, and more. The data exists. It is longitudinal. It is structured (although often in proprietary formats). Yet it largely remains outside clinical workflows.
And that is where the Women for FHIR journey naturally continued: exploring how to connect these worlds – clinical need, consumer-generated data, and interoperable standards – in a way that is meaningful, reusable, and scalable.
Work in progress (and worth it)
This journey is very much work in progress. In many conversations I hear the same question:
“Isn’t it good enough if women just show their app during a consultation?”
Every time I hear it, I pause. Because we would never ask that question about lab results, medication lists, or imaging data. We standardize those because we know structured, reusable data creates long-term value, whether for clinical decision support, prevention, research, or system-wide learning.
And yet, when it comes to menstrual cycle data, data that clinicians confirm is relevant, and that millions of women already track, we seem willing to accept a workaround.
That tension reveals something deeper. We find ourselves in a familiar chicken-and-egg situation. To justify standardization, people ask for strong use cases. To generate strong evidence and scalable use cases, we need structured data.
I am a strong believer in use cases. At the same time, I increasingly see that awareness matters here just as much. We already know this data is clinically relevant. We already know it is being tracked. We already know FHIR can represent it.
So perhaps this is one of those moments where we have to move slightly ahead of the curve – because we understand that having a shared profile will enable progress, not the other way around.
Momentum is real. Enthusiasm is real. But translating that into durable interoperability takes coordination, persistence, and a few deliberate steps forward.
Continuing the conversation at FHIR DevDays
The interoperability gap in women’s health will not close by itself. But the ingredients are there: clinical relevance, existing data, supportive technologists, engaged standards experts, and a growing community that cares. I am grateful to be on this journey with so many thoughtful, committed people, and I know we are not alone.
At the upcoming FHIR DevDays, we will continue this work. Not as an abstract discussion, but as a practical effort to define what needs to happen next, together.
I would love to connect if you:
- are conducting research in this space
- can contribute to standardization
- represent a technology organization willing to pilot this in practice
- see funding opportunities to accelerate it
And besides connecting, please join us at FHIR DevDays and be part of the conversation in person. This topic deserves the collective expertise of our community.
To learn more, head over to the Women for FHIR page, or if you’d like to join the conversation at DevDays, register now.
Interoperability shapes what becomes visible in healthcare. Let’s make sure women’s health is fully visible.