Using Self-Study and Peer-to-Peer Support to Change “Sick” Care to “Health” Care: The Patient Perspective

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Authors: Camille Nebeker, Bethany Weisberg, Eric Hekler, and Michael Kurisu

Frontiers Digital Health, 04 June 2020 | https://doi.org/10.3389/fdgth.2020.00002

Early on in the development of Project Apollo, we had the opportunity to fund an ethnographic study about the genesis of our project. This study offers patient perspectives about our rationale for founding Precision Healthcare Ecosystem and is one of eight studies offered by Frontiers in Digital Health as part of the research topic: Creating Evidence from Real World Patient Digital Data.

Background: Access to digital health technologies is contributing to a paradigm shift where sickcare may become authentic healthcare. Individuals can now access personal health data through wearable sensors, affordable lab screenings, genetic and genomic sequencing, and real-time health tracking apps. Personal health data access creates opportunities to study health indicators 24/7 and in real time. This is especially useful for patients with hard-to-diagnose or treat diseases, which led to a self-formed patient group called Project Apollo. Project Apollo is composed of highly motivated patients with common experiences of undiagnosed conditions, a lack of clear treatment options, and shared frustrations with navigating the U.S. healthcare system. These experiences have led the Apollo cohort to supplement their health knowledge through self-study research.

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Precision Healthcare Ecosystem (PHE) is a CA 501c3 nonprofit corporation, created with the vision that "The Doctor of the Future is One's Self.” Its inaugural program, Project Apollo, utilizes a multidisciplinary, collaborative and integrative care model to educate, enable and empower participants to lead a personalized health journey.

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