JMIR Publications

ABSTRACT

Background:

Patient-reported outcomes (PRO) data refer to information systematically reported by patients, or on behalf of patients, without the influence of healthcare professionals. It is a focal point of the healthcare system's ambition towards a more involving and personalized healthcare system. It is recognized that PRO provides 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 PRO.

Objective:

To develop and examine the use of data-informed text vignettes as an alternative to quantitative representations of data in clinical practice and to examine how this is perceived by patients and health care professionals.

Methods:

The text vignettes are created from participant responses to the READHY questionnaire, which encompasses health literacy, health education, and eHealth literacy. The text vignettes are created from 13 individual sentences, each corresponding to a scale in the READHY questionnaire. The study consists of three sequential parts In Part I, individuals with chronic obstructive pulmonary disease (COPD) completed the READHY instrument, providing data used to create vignettes based on cluster profiles from the READHY dataset. Part II focused on developing scale-based strings representing all READHY dimensions, evaluated through iterative cognitive interviews. In Part III, healthcare professionals and participants assessed the utility and recognizability of the vignette profiles.

Results:

Clinicians and patients both understand and relate to the text vignettes. Patients view the text vignettes as an accurate reflection of their PRO responses and clinicians perceive the text vignettes as aligned with their understanding of patients' experiences.

Conclusions:

Text vignettes illuminate new perspectives, particularly related to social support, knowledge, health, and severity of the condition. The textual presentation is effective, accessible, and comprehensive. Challenges with language and layout require customization and clinician training for meaningful interpretation. Findings also support the need to expand the study and enhance clinical relevance, with alternative or contextually relevant text vignettes.