As reported by Reuters this week, more than 42,000 children aged 6–17 were diagnosed with gender dysphoria last year, a 70% increase from 2020. The first-of-its-kind research, conducted by Komodo Health™, examined the diagnosis of gender dysphoria — the distress caused by identifying as a gender different from the one assigned at birth — among teenage and pre-teen adolescents.

In the absence of reliable national data, Reuters asked Komodo to analyze this issue using its Healthcare Map™, which includes comprehensive patient journey insights for 330 million Americans, to investigate youth gender dysphoria diagnosis rates and the use of puberty blockers as a treatment. For this analysis, Komodo evaluated the rate of diagnosis over a five-year period, from 2017–2021, and found that at least 121,882 children had received a diagnosis within that period of time. 

This analysis informed Reuters’ reporting on emerging healthcare needs among transgender youth. Reuters’ investigation, fueled by Komodo’s insights, is intended to shed objective light on the prevalence of gender dysphoria amongst health-insured youth and the complex, gender-affirming healthcare needs that these youth may have. However, given recent controversy around this subject matter, the story could prompt questions about — or even opposition to — the findings of this analysis. 

Anchoring Healthcare in the Ground Truth of the Patient Journey

Komodo’s foundational belief is that all healthcare stakeholders need a reliable “ground truth” understanding of the patient journey in order to illuminate health issues and care gaps. From our earliest conversations in 2014 about what kind of company we aspired to be, unbiased, reliable insights have been the cornerstone of our mission, guiding the development of our technology in order to unlock accurate, comprehensive research and healthcare intelligence. These insights further the understanding of healthcare delivery and outcomes to, for instance, produce HEOR studies that can help improve access to care, track the pandemic’s impact on cancer screenings and diagnosis, and accelerate time to diagnosis for rare disease patients. 

At Komodo, we are mapping healthcare across all disease areas and settings of care because we believe the health system today is hampered by a lack of transparency into the reality of what patients experience and need. 

Carefully considered data should be a key pillar of serious discussion, as the Reuters reporting will surely produce. And the pursuit of information transparency is essential for all healthcare stakeholders, to understand and act on the insights that can reduce the burden of disease and better meet the evolving needs of patients. For example, insights from Komodo can help shed light on essential issues like health disparities — information that can then be used to design appropriate interventions, clinical recommendations, or policies that can improve the equity of care delivery. This journey begins with data and evolves from that foundation.

As with anything related to the health and care of an individual, clinical guidelines can and should evolve as the needs of the patient population change and medical evidence advances. In the case of Reuters’ story on gender dysphoria diagnosis and treatment, the insights needed for an informed healthcare conversation about the pediatric population were not readily available. Our analysis contributes to the evidence of an increasing diagnosis rate, and thus a growing patient population with unique needs that must be met and supported at all stages of the patient journey, from mental health counseling to drug therapy and surgery. Discussions that aim not only to absorb the current reality but to accelerate planning for the future begin with questions: What kind of care is needed? Where are there gaps in care? What are patients’ unmet needs? In addition to listening to patient advocates to understand the patient experience, a comprehensive picture of data and insights is also a key step toward providing the right solutions.

Read the full story, As more transgender children seek medical care, families confront many unknowns, and the accompanying sidebar, Putting numbers on the rise in children seeking gender care, in Reuters.

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