Standardized Integration of Person-Generated Data Into Routine Clinical Care

Abstract

Person-generated data (PGD) are a valuable source of information on a person's health state in daily life and in between clinic visits. To fully extract value from PGD, health care organizations must be able to smoothly integrate data from PGD devices into routine clinical workflows. Ideally, to enhance efficiency and flexibility, such integrations should follow reusable processes that can easily be replicated for multiple devices and data types. Instead, current PGD integrations tend to be one-off efforts entailing high costs to build and maintain custom connections with each device and their proprietary data formats. This viewpoint paper formulates the integration of PGD into clinical systems and workflow as a PGD integration pipeline and reviews the functional components of such a pipeline. A PGD integration pipeline includes PGD acquisition, aggregation, and consumption. Acquisition is the person-facing component that includes both technical (eg, sensors, smartphone apps) and policy components (eg, informed consent). Aggregation pools, standardizes, and structures data into formats that can be used in health care settings such as within electronic health record-based workflows. PGD consumption is wide-ranging, by different solutions in different care settings (inpatient, outpatient, consumer health) for different types of users (clinicians, patients). The adoption of data and metadata standards, such as those from IEEE and Open mHealth, would facilitate aggregation and enable broader consumption. We illustrate the benefits of a standards-based integration pipeline for the illustrative use case of home blood pressure monitoring. A standards-based PGD integration pipeline can flexibly streamline the clinical use of PGD while accommodating the complexity, scale, and rapid evolution of today's health care systems.

Keywords: data sharing; health care; mobile health; patient-generated health data; telemedicine.