Blueprint to Close the Women%E2%80%99s Health Gap 2025

Women’s health data is often not collected, not published in the public domain or incomplete, as highlighted in a Forum and MHI analysis of clinical trial results, CPGs and global datasets. When data does exist, such as data intended to track condition prevalence, reporting across different datasets is variable. For example, the World Health Organization (WHO) estimates that around 10% of women of reproductive age are living with endometriosis, while the Global Burden of Disease estimates this figure to be 1–2%.65,66 That variation means between 24 million and 190 million women could have endometriosis, or even more when accounting for underdiagnosis.67 Data discrepancies lead to difficulty with estimating and describing the health of women across the selected conditions. These discrepancies are particularly evident in LICs and LMICs, where a lack of modern data infrastructures can lead to missed opportunities for data capture.68 Patient registries are critical elements of data collection, resource allocation and service planning. They collect data on symptoms, medication use, service usage, procedures and patient-reported outcomes. Health researchers and policy-makers can use this information to observe the course of the condition, understand variations in treatment outcomes and assess effectiveness across and within populations. The Forum and MHI analysis found that many countries lack condition-specific patient registries for the selected conditions.69 Even when widely used and accepted registries exist, gaps persist: for example, international data collection standards are absent for many conditions.70 Population-level tracking of breast cancer stage and breast cancer recurrence is particularly poorly and inconsistently documented within the registries.71 The ultimate outcome measure – death – is neither consistently nor accurately counted. No comprehensive source to track global mortality rates exists.72 Countries often self- report into mortality databases, and data is often missing, particularly data from LICs and LMICs. Stakeholders could explore how to standardize, collect, report and update mortality data between and within countries to develop a comprehensive picture of disease burden, aid the allocation of resources and support healthcare systems to improve health outcomes. 2.1.1 Lifespan data is poor; health span data availability and quality are worse The Forum and MHI, in collaboration with the Global Alliance for Women’s Health working groups, developed proxy measures to uncover the scale of the data gap. These measures assessed global medication tracking of evidence-based treatments for the selected conditions. Inaccuracies – specifically, not knowing how, why or when women are either taking medications or missing opportunities to take medications – undermine a chance to inform investment in interventions or to improve care delivery. Lack of data can often impede monitoring and surveillance of medications and the effects on women.73 2.1 Count women Improving data collection and standards could increase the understanding of women-specific needs. Blueprint to Close the Women’s Health Gap: How to Improve Lives and Economies for All 14