JMIR Publications

ABSTRACT

Background:

Person-generated health data (PGHD) are health data that people generate, record and analyse for themselves. Although health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report health effects they experience from using their PGHD. Patient-reported outcome measures (PROMs) allow patients to systematically self-report their outcomes of a health care service. They generate first-hand evidence of the impact of health care services, and are able to reflect the real world diversity of actual patients and management approaches. Therefore, this paper argues that a PROM of utilising PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD.

Objective:

This paper describes a method for developing PROMs for people who are using PGHD in conjunction with their clinical care – ‘PROM-PGHD’, and illustrated through a case study.

Methods:

The five-step Qualitative Item Review (QIR) method was augmented to guide the development of a PROM-PGHD. However, using QIR as a guide to develop a PROM-PGHD requires additional socio-technical understanding of the PGHD and the health technologies from which they are produced. Therefore the QIR method is augmented for developing a PROM-PGHD, resulting in the PROM-PGHD Development Method.

Results:

A worked example was used to illustrate how the PROM-PGHD Development Method may be used systematically to develop PROMs applicable across a range of PGHD technology types used in relation with health conditions.

Conclusions:

This paper is the first to describe, and illustrate a method for developing a PROM-PGHD; which may be applied to many different cases of health conditions and technology categories. It has broad relevance for evidence-based practice in clinical work with PGHD.