Swiss Upper Extremity Outcomes Registry
Swiss Upper Extremity Outcomes Registry: implementing the ICHOM Hand and Wrist Conditions set in Switzerland
The biggest challenge of every modern health system in this decade is to truly put patients first. That requires measuring performance, listening to patients’ opinions, and working to improve their outcomes and experiences. In Switzerland there isn’t any structured system to register outcomes measurements of the treatments for hand and wrist conditions, even though they are the most important basis to control and improve quality, catalyze communication and decision making between physicians and patients and build a research database, to be used for comparative research, health technology assessment and benchmarking between institutions.
The aim of this project is to establish an outcomes registry in a pilot group of institutions and to set the basis for an upscale at national level. A Standard data set for hand and wrist conditions was published in 2020 by the International Consortium for Health Outcomes Measurement (ICHOM). The implementation of this set should generate a common compatible system, in which measurements can be compared not only on a national, but also on an international level.
In 2020, three SWISS hospitals decided to build an outcomes registry based on already existing software of Dutch medical engineers, using the newly developed ICHOM Standard set for hand and wrist conditions. The patients are risk stratified and divided over five tracks according to the type of problem to allow for an optimal analysis. Treatment outcomes of hand and wrist conditions are entered by surgeons and therapists in a multi-language registry to serve the needs of all the stakeholders.
The registry went live in the last quarter of 2020 and 780 patients have been registered so far. It is too early to evaluate results and measure impact on patient care, but first experience is very positive. Semi-automatic track assignment and automatic emails are features that reduce clinician’s burden. Patient’s compliance has been growing during the first months of clinical use of the registry. The delivery of outcome reports to patients and to GPs makes the whole treatment very transparent, increasing the results acceptance of the patients.
The establishment of a quality registry is a big endeavor with risks and pitfalls, but with a careful planning and a professional team it can be mastered successfully. The most important and challenging part, is to convince and motivate physicians to engage in this project, not seeing it as a threat, but rather as an opportunity for improvement. Quality control, pay per performance and benchmarking are becoming reality and it is fundamental for physicians to stay on the cutting edge of these developments. By doing this, they can keep the lead and the possibility to advocate for themselves and their patients. Quality can only be improved if it is measured in a meaningful manner. In an outcomes registry, clinician-reported and patient-reported information are collected in a structured and transparent way, strengthening the collaboration between physician and patient and eventually building value for all stakeholders involved.