Are we measuring what matters? Exploring the alignment between the ICHOM set for schizophrenia and online patient stories

Objectives In recent years, the use of standardized sets of outcome measures has grown in popularity, particularly through initiatives like the International Consortium for Health Outcome Measurement (ICHOM). While these sets use patient-reported outcome measures (PROMs) to reflect what matters to patients, it is unclear if they accurately capture patients' lived experiences and contribute to value-based health care (VBHC). This study seeks to explore the usage of online patient stories to assess the patient-relevance of the outcomes measured in the ICHOM-set for schizophrenia. The aim is to show to what extent these align with outcomes that schizophrenia patients describe in online patient stories. Methods First, a qualitative, cross-sectional analysis of 28 online stories of patients with schizophrenia was performed in the ATLAS.ti software. Second, the item and definition section of the outcome measures used in ICHOM-set for schizophrenia were systematically compared to the underlying codes resulting from the qualitative analysis of the patient stories. Results The findings reveal significant overlap especially in clinical areas such as symptoms, functioning, and treatment. However, the study also reveals that patients frequently write about topics that are missing or underrepresented in the ICHOM standard set, such as coping strategies and the value of social support. A notable gap is the issue of stigma and social identity, which appeared prominently in the patient stories but is not addressed in the current ICHOM standard set. Conclusion While the ICHOM set reflects many clinical and functional outcomes, it falls short in capturing the full scope of patient experiences. Online patient stories allow for a deeper exploration of dimensions that are sometimes missed in standardized outcome sets like ICHOM. Considering such perspectives can help to improve VBHC by ensuring outcome measures reflect on what truly matters to schizophrenia patients.