10 Chapter 1 such as the Outcome-Based Healthcare program 19,20. Importantly, in 2022, the Ministry presented the “Integraal Zorgakkoord” which states that by 2025, all healthcare organizations in the Netherlands should routinely collect outcome information with the purpose to improve shared decision making by patients and healthcare professionals, and to create a culture of continuous learning and quality improvement among healthcare professionals and organizations 10,21. Measuring relevant health outcomes in routine clinical care Before healthcare organizations can start with the routine collection of outcome information in clinical care, it is first essential to determine which health outcomes should be measured. Consensus must be reached on which health outcomes are relevant for patients with a specific medical condition and how to measure these relevant health outcomes 2. Many researchers and organizations have aimed to facilitate the routine collection of health outcomes by defining sets of health outcomes that matter to patients with a specific medical condition 22-24. These outcome sets often consist of a combination of clinical and patient-reported outcomes. Patient-reported outcomes are direct reports from the patient about the experienced symptoms, functioning, health-related quality of life or other health aspects and are measured using patient-reported outcome measures (PROMs) 25-27. PROMs are standardized generic (i.e. applicable for everyone) or disease-specific (i.e. applicable for a certain disease, condition, or treatment) questionnaires that can be used to measure the various aspects of health 28. These PROMs can be implemented in routine clinical care to collect the relevant patient-reported outcomes at fixed moments during the patient care trajectory. The implementation of PROMs in routine clinical care is, however, often hindered by either the absence of a predefined outcome set with relevant clinical and patient-reported outcomes, or the presence of multiple outcome sets for a specific medical condition. Lack of harmonization across the sets can lead to differences and inconsistency in the selected clinical and patientreported outcomes, terminology used and recommended PROMs 22. To be able to routinely use collected outcome information in clinical care, it is therefore essential to obtain consensus on one set of health outcomes that are relevant for patients with a specific medical condition.
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