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American Life in Realtime: a benchmark registry of health data for equitable precision health

Nature Medicine volume 29, pages 283–286 (2023)Cite this article

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Despite the potential for improving health equity, the research community lacks benchmark training datasets of person-generated health data, which limits the ability to develop precision health models that are equally effective across diverse populations. Both the validity and the generalizability of an artificial intelligence or machine learning system are intrinsically tied to the underlying training data. The ideal benchmark dataset should feature high-quality, well-characterized data that comprehensively represent the target population in order to instill the highest standards of scientific transparency and rigor to model development, validation and evaluation.

Person-generated health data cohorts in the US National Institutes of Health’s All of Us research program, UK Biobank, the Framingham Heart Study and the majority of commercial studies rely on convenience sampling and/or ‘bring your own device’ designs. Consequently, those who lack access to digital technologies (who tend to be older, Black, Latino, Indigenous, poorer and sicker) are systematically under-represented5,6. The National Health and Nutrition Examination Survey is representative, but it uses a cross-sectional design and a 1-week accelerometer measurement period, which limits its ability to assess temporal effects or account for seasonality. The absence of a benchmark dataset risks the introduction of systemic bias, exacerbation of health disparities, and causing of additional patient harm in already marginalized groups7,8.

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Acknowledgements

We are grateful to the participants who agreed to contribute their time and digital data for research. We thank Evidation Health for study app development. This work was funded by a grant from the National Library of Medicine at the US National Institutes of Health, awarded to R.R.C. (R01LM013237). ALiR relies on data from surveys administered by the Understanding America Study, which is maintained by the Center for Economic and Social Research at the University of Southern California. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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Authors and Affiliations

  1. Leonard D. Schaeffer Center for Health Policy & Economics, University of Southern California, Los Angeles, CA, USA

    Ritika R. Chaturvedi

  2. Center for Economic and Social Research, University of Southern California, Los Angeles, CA, USA

    Marco Angrisani, Tania Gutsche, Eva Ortega & Arie Kapteyn

  3. RAND Corporation, Division of Social and Economic Wellbeing, Pittsburgh, PA, USA

    Wendy M. Troxel

  4. Evidation Health, San Mateo, CA, USA

    Monika Jain & Adrien Boch

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  1. Ritika R. Chaturvedi
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Correspondence to Ritika R. Chaturvedi.

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Chaturvedi, R.R., Angrisani, M., Troxel, W.M. et al. American Life in Realtime: a benchmark registry of health data for equitable precision health. Nat Med 29, 283–286 (2023). https://doi.org/10.1038/s41591-022-02171-w

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