Should Wearables Data Live In Your Electronic Medical Record?

Shaywitz of EldredThe great promise of wearables for medicine includes the opportunity for health measurement to participate more naturally in the flow of our lives, and provide a richer and more nuanced assessment of phenotype than that offered by the traditional labs and blood pressure assessments now found in our medical record.  Health, as we appreciate, exists outside the four walls of a clinical or hospital, and wearables (as now championed by AppleGoogle, and others) would seem to offer an obvious vehicle to mediate our increasingly expansive perspective.

The big data vision here, of course, would be to develop an integrated database that includes genomic data, traditional EMR/clinical data, and wearable data, with the idea that these should provide the basis for more precise understanding of patients and disease, and provide more granular insight into effective interventions.  This has been one of the ambitions of the MIT/MGH CATCH program, among others (disclosure: I’m a co-founder).

One of the challenges, however, is trying to understand the quality and value of the wearable data now captured.  To this end, it might be useful to consider a evaluation framework that’s been developed for thinking about genomic testing, and which I’ve become increasingly familiar with through my new role at a genetic data management company.  (As I’ve previously written, there are many parallels between our efforts to understand the value of genomic data and our efforts to understand the value of digital health data.)

The evaluation framework, called ACCE, seems to have been first published by Brown University researchers James Haddow and Glenn Palomaki in 2004, and focuses on four key components: Analytic validity, Clinical validity, Clinical utility, and Ethical, Legal, and Social Implications (ELSI).   The framework continues to inform the way many geneticists think about testing today – for instance, it’s highlighted on the Center for Disease Control’s website (and CDC geneticist Muin Khoury was one of the editors of the book in which the ACCE was first published).

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