Heavy Menstrual Bleeding (HMB)

A brief overview of the outcomes from the “Let’s Build! Bridging the Gender Data Gap in FHIR” session at FHIR DevDays 2025, highlighting what was achieved and the current status of the Heavy Menstrual Bleeding project.

• Project Introduction
• FHIR Implementation Guide

Community-facing Questionnaire - provided by Women's Health Road (WHR) (Track 1)

• Modeled as a FHIR Questionnaire in preparation for the session.
• Translated into German, Spanish, French, and Portuguese. This questionnaire demo tool allows switching between languages.
• Terminology mapped using SNOMED CT codes, including translations in all supported languages.

Specialist Referral Questionnaire (Track 2)

• WHR provided medical data for the use case of "Flo," a woman affected by HMB; this concentrated expertise serves as an ideal starting point for a next steps.
• Demonstration of fast implementation of coordinated workflows: data extraction and population (as described in Structured Data Capture) to avoid repeated entry of already available data.

Data Workflow (Track 3)

• Using questionnaires to capture data—such as completing the community-facing questionnaire during routine GP checkups to identify women potentially affected by HMB—is meaningful and forward-looking.
• To optimize the use of questionnaires and ensure continuity of care and seamless data flow within clinical systems, it is useful to determine how this information can be mapped to downstream artifacts—such as ServiceRequest or components of a patient summary.
• Several Observation profiles were created.
• Discussions quickly highlighted open questions, such as how to represent relevant Conditions/Observations in a Patient Summary.

Gaps (not limited to FHIR)

• Semantic interoperability: For example, the question "Duration of menstrual period in days" can be ambiguous—does it refer to the first, the last, or the average period? What is clear to specialists may not be obvious to non-specialists. Clarity is crucial for interoperability.
• Incomplete answer lists: Some responses were missing, e.g., period pain body sites such as "vaginal area" and "headache".
• Representation of female-specific topics: Open questions remain about defining these as problems and/or conditions in a Patient Summary (Zulip discussion).
• FHIR specification gaps: Observation category currently has no specific code for "Gynecologic/Obstetric History" (FHIR-51835) and the spec lacks general examples in this area (FHIR-51836).

Bringing the Community Together

• Progress is best achieved by bringing as many different stakeholders together. Examples from semantic interoperability discussions and ValueSet extensions demonstrated this clearly.
• Multilingual support was spontaneously highlighted to improve accessibility. This input shows both the breadth of community experience and FHIR's ability to support it.
• Fascinating collaboration: excellent coordination enabled rapid progress and knowledge sharing on tooling usage, including terminology, translations, and questionnaire handling.

Outcome

• Personally overwhelming commitment and engagement from all participants; a big thank you and let’s keep going!
• Raised community awareness of HMB and women’s health.
• FHIR specification issues were documented.
• Discussions continued on Zulip.
• Results were incorporated into the Implementation Guide, providing a foundation for further development or follow-up projects.
• Another highlight: Two medical informatics students from Bern University of Applied Sciences will base their theses on this project.

Validation Disclaimer:
None of the FHIR artifacts developed have undergone medical validation. They mainly represent technical and collaboratively developed results and must not be used as clinically validated content.