Creation of Text Vignettes Based on Patient-Reported Data to Facilitate a Better Understanding of the Patient Perspective: Design Study.

Abstract

Background: Patient-reported outcome (PRO) data refer to information systematically reported by patients, or on behalf of patients, without the influence of health care professionals. It is a focal point of the health care system's ambition toward becoming more involving and personalized. It is recognized that PROs provide valuable data. However, despite this recognition, there are challenges related to both patients' and clinicians' accurate interpretations of the quantitative data. To overcome these challenges, this study explores text vignettes as a representation of PROs.

Objective: This study aimed to develop data-informed text vignettes based on data from the Readiness and Enablement Index for Health Technology (READHY) instrument as another way of representing PRO data and to examine how these are perceived as understandable and relevant for both patients and clinicians.

Methods: The text vignettes were created from participant responses to the READHY instrument, which encompasses health literacy, health education, and eHealth literacy. The text vignettes were created from 13 individual text strings, each corresponding to a scale in the READHY instrument. This study consisted of 3 sequential parts. In part 1, individuals with chronic obstructive pulmonary disease completed the READHY instrument, providing data to be used to create vignettes based on cluster profiles from the READHY instrument. Part 2 focused on the development of scale-based strings representing all READHY dimensions, which were evaluated through iterative cognitive interviews. In part 3, clinicians and patients assessed the understanding and relevance of the text vignettes.

Results: Clinicians and patients both understood and related to the text vignettes. Patients viewed the text vignettes as an accurate reflection of their PRO responses, and clinicians perceived the text vignettes as aligned with their understanding of patients' experiences.

Conclusions: Text vignettes can be developed using PRO instruments, with individual scales as input strings. This provides an opportunity to present numeric values in a text format that is understandable and recognizable to most patients and clinicians. Challenges with the vignette's language and layout require customization and clinician training to ensure meaningful interpretation. Findings also support the need to expand the study and enhance clinical relevance with alternative or contextually relevant text vignettes.