Use of patient-reported data in local quality improvement work in health and care services: A scoping review

Introduction

Patient-reported data are information that patients or users provide about their own experiences relating to health, illness and experiences with the health and care services. These data are often divided into Patient Reported Experience (PRE) and Patient Reported Outcome (PRO). The measurement instruments used to assess PRE and PRO are called PREMs (Patient Reported Experience Measures) and PROMs (Patient Reported Outcome Measures). Several methods can be used to collect such data, where the use of standardized questionnaires is widespread. PREMs and PROMs are increasingly recognized as valuable tools in the health and care services to promote patient-centred care and strengthen the quality of the healthcare services. The use and follow-up of results from PREMs and PROMs can contribute to targeted quality improvement of the health services. It may therefore be useful to map which approaches and models are described in the literature for how results from PREMs and PROMs are used in local quality improvement work in the health and care services.

Objective

In the National Budget for 2025-2026, it is stated that the Norwegian Directorate of Health, in collaboration with the Norwegian Institute of Public Health, is to investigate models for the systematic follow-up of patient and user surveys, to support the use of results from these surveys to improve health and care services. As part of this work, the Norwegian Institute of Public Health is to conduct a scoping review. The aim of the scoping review is to identify and describe studies reporting how data from PREMs and PROMs from quantitative questionnaires have been used in local quality improvement work in the health and care services.

Method

We conducted a scoping review, which maps and describes existing literature or research on a specific topic area. We included peer-reviewed publications regardless of study design, if they described approaches or models for using results from PREMs and PROMs in local quality improvement in health and care services. We carried out the review in several steps. In step 1 we searched for systematic reviews and scoping reviews published in the last five years but identified none that covered our inclusion criteria. For step 2, we planned to update the searches in any included reviews. As we did not include any reviews in step 1, step 2 was no longer relevant and was omitted. In step 3 we searched for and reviewed primary studies published from January 2012 to March 2026. A librarian performed the literature searches for steps 1 and 3 in four databases for each search, and the search strategies were peer reviewed by another librarian. From the included studies we only extracted descriptive information about approaches and models the study reported having used.

Results

We did not identify any relevant systematic reviews or scoping reviews covering the research question. We included and extracted data from 50 primary studies. Of the 50 studies, 20 described one or more named models used in the quality development work. Plan-Do-Study-Act (PDSA) was the model that was identified most times, reported used in 12 studies. The other models and frameworks included the Kano model (2 studies), Learning Health System (2 studies), Six Sigma (2 studies, both with use of the Define-Measure-Analyse-Improve-Control (DMAIC) framework), Lean Six Sigma (1 study), Lean thinking (with use of A3 Thinking) (1 study), Plan-Do-Check-Act cycle (1 study), Comprehensive Unit-based Safety Program (CUSP) (1 study) and integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) (1 study). The 30 studies that had not described a specific model often gave only sparse descriptions of the approach they had used. Among the more concrete approaches reported were, for example, regular surveys, collaboration both within and across organisations, teamwork and structured work in cycles.

Discussion

We identified 50 primary studies describing approaches or models for how results from quantitative PREMs and PROMs were acted on and used in local quality improvement work in the health services. Many of the included studies described specific improvement interventions based on patient-reported data but did not explain in detail how the data were acted on or which improvement model was applied. Descriptions of the follow-up process itself were therefore often sparse. To map more closely which approaches and models are used in practice, there is a need for publications that more clearly describe the process from data collection with PREMs and PROMs to the implemented intervention.

Conclusion

We identified 50 primary studies that met our inclusion criteria. The most frequently mentioned model was the PDSA cycle, followed by among others the Kano model, Six Sigma and Learning Health System. Other approaches apart from specific models included, among other things, regular surveys and teamwork to follow these up. In many of the studies, the actual follow-up of patient-reported data used for local quality improvement work was sparsely described. Nevertheless, the scoping review provides an overview of which approaches and models are used in practice and described in published literature.