The Changing Locus of Health Data Production and Use: Patient-Generated Health Data, Observations of Daily Living, and Personal Health Information Management

TL;DR

This paper explores emerging concepts like PGHD, ODLs, and PHIM, analyzing their implications for health data production, patient engagement, and healthcare relationships, highlighting their differing perspectives and underlying assumptions.

Contribution

It introduces and discusses early-stage conceptualizations of health data practices, emphasizing their distinct perspectives on health, data, and patient-doctor dynamics.

Findings

Different labels underpin diverse perspectives on health and data.

These concepts influence patient-doctor relationships and data management.

Theoretical insights into health data practices are provided.

Abstract

Despite the growing attention of researcher, healthcare managers and policy makers, data gathering and information management practices are largely untheorized areas. In this work are presented and discussed some early-stage conceptualizations: Patient-Generated Health Data (PGHD), Observations of Daily Living (ODLs) and Personal Health Information Management (PHIM). As I shall try to demonstrate, these labels are not neutral rather they underpin quite different perspectives with respect to health, patient-doctor relationship, and the status of data.