Evaluating the population-based utilization and benefit of digitally collected patient-reported outcomes and experiences in patients with chronic diseases: The PROMchronic study protocol

Abstract Background Chronic diseases are associated with a high disease burden. Under- and overprovision of care as well as quality variation between healthcare providers persists, while current quality indicators rarely capture the patients’ perspective. Capturing patient-reported outcome measures (PROMs) as well as patient-reported experience measures (PREMs) is becoming more and more important to identify gaps in care provision, prioritize services most valuable to patients, and aid patients' self-management. Methods This prospective cohort study aims to evaluate the potential benefits of PROM usage in patients with chronic diseases. We evaluate whether (1) digitally collected PROMs and PREMs can be used for health system performance assessment (HSPA) by generating a representative response of chronically diseased individuals with asthma, chronic obstructive pulmonary disease (COPD), diabetes, and coronary artery disease (CAD) across Germany and (2) whether, based on the PROMs and PREMs, low-value care can be identified. As patient-reported outcomes (PROs) are rarely presented back to patients, (3) this study also examines patients’ reactions to their PROM scores in the form of digital PRO feedback. For these purposes, randomly selected patients from a nationwide German insurer are digitally surveyed with generic and disease-specific PROMs and PREMs as well as additional questions on their health-related behavior four times over one year. Individual PRO feedback is presented back to patients longitudinally and compared to a peer group after each survey period. Patient-reported data is linked with health insurance data. Response rates, changes in health and experience outcomes over time, self-reported changes in health behavior, and healthcare system utilization will be analyzed. Discussion We aim to fill the research gap on the population-based utilization of PROMs and PREMs in patients with chronic diseases and add to the current understanding of PROM data-sharing with patients. The study’s results can thereby inform whether a healthcare system-wide approach of collecting PROMs and PREMs can be utilized to identify low-value care, assess quality variation within and across chronic conditions, and whether PRO feedback is helpful and associated with any changes in patient’s health behaviors. Trial registration German Clinical Trials Register - DRKS00019916. Registration date: August 22, 2023.