Background
Person-generated health data (PGHD) are health data that people generate, record, and analyze for themselves. Although the health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report the 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 utilizing PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD.
Objective
This paper aims to describe a method for developing PROMs for people who are using PGHD in conjunction with their clinical care—PROM-PGHD, and the method is 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 consideration 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 to various health conditions.
Conclusions
This paper describes and illustrates a method for developing a PROM-PGHD, which may be applied to many different cases of health conditions and technology categories. When applied to other cases of health conditions and technology categories, the method could have broad relevance for evidence-based practice in clinical work with PGHD.
If patient-reported outcome measures are considered key health-care quality indicators, who is excluded from participation?
