Electronic Patient-Generated Health Data for Healthcare

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Maurice Mars, MBChB, MD
Richard E. Scott, PhD

ABSTRACT


Gathering and sharing by individuals of their health-related data to enhance their medical care or personal wellness are popular and growing rapidly. As a relatively new field, nomenclature is variable, but this is termed patient-generated health data, person-generated health data, or simply PGHD. This chapter introduces the concept of PGHD. Essential nomenclature is provided, and a model of the purpose, flow, and use of PGHD is presented and discussed. Benefits and challenges are noted, and legal, regulatory, and ethical issues are briefly outlined. Although benefits of PGHD are perceived or inherently believed, the available empirical evidence for improved and collaborative healthcare monitoring and management is slight. Also, there are many challenges. Some of these noted challenges include smart device regulation and reliability, data quality, integration into healthcare processes (adoption), and data integration into records (interoperability). Furthermore, there are legal, regulatory, and ethical issues. Widespread adoption and use of PGHD will require more definitive research into evidence of benefits, and efficient and effective resolution of the challenges.

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Section
Chapter 1