HL7 Informative Document: Patient Contributed Data, Edition 1

This white paper explores and defines Patient Contributed Data (PCD). PCD is data collected by patients and includes data from health devices, apps and sensors. These data can be used to understand progress, deterioration, or cyclical variations in health conditions. It can also be correlated with other data to understand patterns.

This document aims to raise awareness and build strategies for additional standards and approaches to make PCD more available and accessible. It looks at barriers to effective use of PCD and recommends strategies for overcoming the barriers as well as ways to integrate this data for clinical use.

The audience for this document includes medical professionals, health technology professionals, standards developers, policy makers, as well as individual patients and their caregivers.

Main sections:

· PCD strengths and limitations

· Current work leveraging PCD

· Definitions relevant to patient contributed data

· Vision statement

· The health data ecosystem

· Principles regarding PCD

· PCD standards overview

· Patient journeys

· Descriptors of PCD

· Recommendations

· Appendix 1: Details of the PHR-S Functional Model

· Appendix 2: Elaboration of PCD Descriptors