AN EXPLORATION INTO PREDICTORS OF SUSTAINED ENGAGEMENT IN THE COLLECTION OF DIGITAL HEALTH OUTCOMES
Author(s)
Preston Long, BS, MA, MSc, PhD1, Belle de Rooij, PhD2, Francesco Patalano, MD3, Ann-Kristin Porth, PhD4, Gottfried Novacek, MD4, Alba Garcia Zarzoso, MS5, Liselotte Fierens, PhD6, Rahim Lalji, PhD7, Margaret Renn Andrews, BS4, Erika Mosor, PhD4, Laura Verbeij, MS8, Valentin Ritschl, PhD4, Tanja Stamm, PhD4.
1Postdoctorate, Medical University of Vienna, Vienna, Austria, 2IKNL, 5612 HZ, Netherlands, 3Novartis, Basel, Switzerland, 4Medical University of Vienna, Vienna, Austria, 5Vall d’Hebron Institut de Recerca, Barcelona, Spain, 6KU Lueven, Heist-op-den-Berg, Belgium, 7Novartis Pharmaceuticals AG Switzerland, London, United Kingdom, 8Erasmus University Medical Center/Erasmus University Rotterdam, Rotterdam, Netherlands.
1Postdoctorate, Medical University of Vienna, Vienna, Austria, 2IKNL, 5612 HZ, Netherlands, 3Novartis, Basel, Switzerland, 4Medical University of Vienna, Vienna, Austria, 5Vall d’Hebron Institut de Recerca, Barcelona, Spain, 6KU Lueven, Heist-op-den-Berg, Belgium, 7Novartis Pharmaceuticals AG Switzerland, London, United Kingdom, 8Erasmus University Medical Center/Erasmus University Rotterdam, Rotterdam, Netherlands.
OBJECTIVES: The Health Outcomes Observatory (H2O) initiative is establishing a Europe-wide, patient-centered data infrastructure to standardize Core Outcome Set (COS) collection, particularly patient-reported outcomes (PROs). H2O has shown the feasibility of multinational, interoperable outcome measurement in oncology, inflammatory bowel disease, and diabetes. However, evidence remains limited on factors affecting inclusion of diverse patient groups and sustained participation. This study aimed to (1) describe and compare demographic, clinical, and psychosocial characteristics of participants across H2O centers and disease areas, and (2) identify factors associated with sustained participation in self-reported data collection.
METHODS: We conducted a prospective cohort study between 2023 and 2026 using datasets from H2O sites in Austria, the Netherlands, Germany, and Spain. Each site performed local analyses using standardized, prespecified templates. Sustained responders, defined as participants completing COS PROs at least twice, were compared with baseline-only responders. Federated analytics examined associations between participation and sociodemographic, clinical, lifestyle, and quality-of-life variables. Logistic regression assessed predictors of sustained response, and odds ratios were pooled across countries using meta-analysis.
RESULTS: Overall, 78% of patients completed baseline and follow-up PROs. Univariable analyses showed that poorer physical and mental health were positively associated with sustained response in selected cohorts, but effects varied across diseases and countries. Pooled odds ratios were not significant: age OR 1.013 (95% CI 0.998-1.028; p=0.100; k=7), time since diagnosis OR 0.997 (95% CI 0.989-1.004; p=0.382; k=2), and BMI OR 0.991 (95% CI 0.964-1.019; p=0.529; k=5).
CONCLUSIONS: This exploratory study found small differences between sustained and baseline-only responders, but these did not remain significant in multivariable or pooled analyses. Patient-level factors alone did not explain engagement. Heterogeneity in recruitment and COS collection processes highlights the need to include contextual and process indicators in future research. These insights can guide equitable, patient-centered infrastructures and improve long-term PRO data quality across H2O disease areas and centers.
METHODS: We conducted a prospective cohort study between 2023 and 2026 using datasets from H2O sites in Austria, the Netherlands, Germany, and Spain. Each site performed local analyses using standardized, prespecified templates. Sustained responders, defined as participants completing COS PROs at least twice, were compared with baseline-only responders. Federated analytics examined associations between participation and sociodemographic, clinical, lifestyle, and quality-of-life variables. Logistic regression assessed predictors of sustained response, and odds ratios were pooled across countries using meta-analysis.
RESULTS: Overall, 78% of patients completed baseline and follow-up PROs. Univariable analyses showed that poorer physical and mental health were positively associated with sustained response in selected cohorts, but effects varied across diseases and countries. Pooled odds ratios were not significant: age OR 1.013 (95% CI 0.998-1.028; p=0.100; k=7), time since diagnosis OR 0.997 (95% CI 0.989-1.004; p=0.382; k=2), and BMI OR 0.991 (95% CI 0.964-1.019; p=0.529; k=5).
CONCLUSIONS: This exploratory study found small differences between sustained and baseline-only responders, but these did not remain significant in multivariable or pooled analyses. Patient-level factors alone did not explain engagement. Heterogeneity in recruitment and COS collection processes highlights the need to include contextual and process indicators in future research. These insights can guide equitable, patient-centered infrastructures and improve long-term PRO data quality across H2O disease areas and centers.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR81
Topic
Health Service Delivery & Process of Care, Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Diabetes/Endocrine/Metabolic Disorders (including obesity), Gastrointestinal Disorders, Oncology