Six months after launching the Persons Project, Canadian women’s health research platform My Normative is expanding its initiative from nine founding partners to more than 30 organisations across seven countries.
The Persons Project launched earlier this year exploring how organisations that collect and use women’s health data in different ways could work together to improve research.
The next phase moves into some of the practical work needed to make that happen, including developing standards for how women’s health data is recorded and shared between different systems.
Founder Danika Kelly says one of the biggest lessons from the first six months has been understanding the different layers that determine how health data is recorded.
“There are technical data standards like Fast Healthcare Interoperability Resources (FHIR) - which are predominantly for electronic medical records - that lack standardisation in many areas of women’s health,” Danika told FutureFemHealth.
“There are accredited standards like those developed by the Canadian Standards Association (CSA) or the International Organization for Standardization (ISO), which are often tied to regulatory and industry practices that also frequently lack robustness in women’s health.”
There is also a third layer, she says: informal industry standards, or simply “the way things have been done”.
Formal standards needed
My Normative is now working with the Canadian Standards Association to identify gaps in formal women’s health standards, while also contributing to work on how menstrual health data should be structured so it can be consistently understood and exchanged between digital health products and electronic medical records.
Potential applications are broad-ranging and practical. A period-tracking app, for example, might hold years of information about someone’s cycle dates, duration and symptoms that would never be manually entered into a medical record by a doctor.
Common standards could eventually allow reliable data collected through apps and devices to move into healthcare systems in a consistent format.
The project is also developing an open-access framework creating a common language for women’s health data, making it easier to understand and combine information even when different organisations have collected or recorded it differently.
My Normative also plans to take the work to the Commonwealth Heads of Government Meeting and advocate for broader adoption of the standards across the Commonwealth’s 56 member states. Four are already represented in the project.
The longer-term goal is what My Normative describes as greater “data liquidity”: making it easier for reliable women’s health information to be understood and used across different organisations, technologies and healthcare systems.
“This is just the beginning,” said Kelly. “The potential scale and impact of The Persons Project is generational.”
The gap between years of cycle data in an app and an almost empty medical record is a concrete interoperability problem. Common fields will only help if they preserve context such as cycle stage, symptom timing and missingness instead of flattening everything into a single value.