By Erasmus MC
This project started in 2018 by a group of 4 Dutch hospitals who initiated the development of a value based core outcome set (COS) for multiple myeloma (yearly incidence of 1300 new cases in the Netherlands), consisting of clinical and patient reported outcomes. Patients participated in the development of this MM-COS. In 2019 the COS was implemented in 5 Dutch hospitals and in 2021 a first proof of concept of the reported aggregated data was produced by the Dutch-Hospital-Data Foundation (DHD).
Oerlemans S, Bennink MC, Levin MD, Broijl A, Van der Klift M, Van Deursen J, Vogels D, Van de Poll-Franse LV, Sonneveld P, Hazelzet JA, Tick LW. Development of a Patient Centered Outcome Set for Patients With Multiple Myeloma to be Used in Clinical Practice. Hemasphere. 2020 May 27;4(3):e366. doi: 10.1097/HS9.0000000000000366. PMID: 32647795; PMCID: PMC7306300
Based on this first proof of Concept, the project team was invited to participate in three other projects:
- The Citrine Project aimed to provide a data model to collect clinical- and patient-reported outcomes as the numerator of Porter’s VBHC equation and health care utilisation data and costs as the denominator
- The IMI H2O project aimed to standardize COS’ in national health observatories throughout Europe to accelerate data collection and safe data use.
- Regie-op-Registers (ROR) a project of the National Healthcare Institute, aiming to build registries to improve and accelerate decision-making about approval and reimbursement of new (expensive) treatments.
Since in all projects the focus was on MM and the aims were partly overlapping and also complementary, these projects were managed by one steering committee.
The combined Citrine and ROR project provided a data model to collect clinical data from the Netherlands Cancer Registry, to collect the PROs from the participating hospitals and collect the health utilisation data (including costs) already collected in the database of the Dutch Hospital Data organization (DHD). Also, the integration of these three data sets (clinical and patient reported outcomes and financial data) was part of the Proof of Concept delivered in these projects.
In the IMI H2O project the initial Dutch COS was internationally standardized based on three consensus meetings in cooperation with participants from the European Myeloma Network, participants from the IMI-Harmony project and patient representatives from the IMI-H2O project and the Myeloma Patients Europe organization. ( Oerlemans, S., et al., Update and international consensus on a patient-centred core outcome set for multiple myeloma in clinical practice and research, in press)