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Toward demographic robustness in digital patient twins: Addressing the gender data gap
Dana Mahr1, Meike Hebich2, Nora Weinberger1
1Institute for Technology Assessment and Systems Analysis, Karlsruhe Institute of Technology, Karlsruhe, Germany.
Digital patient twins require sex- and gender-based equity to ensure fairness and accuracy. Current models often underrepresent diverse populations, leading to health inequities in precision medicine.
Area of Science:
- Digital health
- Biomedical informatics
- Health equity
Background:
- Digital patient twins (DPTs) are emerging tools for precision medicine, simulating individual health.
- Their effectiveness and fairness hinge on representative data and unbiased algorithms.
- Existing DPT initiatives frequently exhibit biases, overrepresenting certain demographics.
Purpose of the Study:
- To argue for sex- and gender-based equity as a core principle in DPT design and implementation.
- To highlight how current DPTs perpetuate health disparities due to underrepresentation of diverse populations.
- To propose solutions for creating equitable and clinically valid DPTs.
Main Methods:
- This opinion piece synthesizes evidence from cardiology, endocrinology, mental health, and medical device research.
- It analyzes documented examples of bias in DPT-related research and applications.
- The authors draw on established knowledge of structural biases in clinical research.
Main Results:
- Current DPT initiatives disproportionately represent male, white, and affluent populations.
- Women, gender-diverse individuals, and people of color are underrepresented, leading to misdiagnoses and inaccuracies.
- Examples include under-recognition of heart failure in women and overestimated oxygen saturation in darker skin tones.
Conclusions:
- Structural biases in clinical research contribute to DPT inequities.
- Addressing these requires balanced data, sex- and gender-informed design, participatory approaches, and subgroup validation.
- Equity in DPTs is essential to avoid exacerbating existing health disparities and realize personalized medicine's potential.
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