Within Sciensano’s Scientific Direction of Epidemiology and Public Health there is a variety of researchers working on patient-reported measures on care experience and health outcomes in different patient groups e.g. in people living with neuromuscular diseases, rare diseases, diabetic foot, HIV, mental health related disorders and pancreatic cancer. This available expertise triggered the idea of the creation of a working group in which researchers working on patient-reported measures could share their expertise and experienced challenges, and also support others interested in setting-up a project comprising patient reported measures. In December 2018 we had our first working group meeting. We chose for a ‘working group’ format because the main aim of the meetings is to have discussions concerning different themes related to patient-reported measures-initiatives e.g. facilitators and barriers when implementing these measures; improving patient participation; assessing the quality of patient-reported measure project proposals; … . These meetings do not have a fixed end-point and our meetings take place on a regular basis. We meet every three months and the agenda is decided on by the entire group.
The main topics of the activities of the LEARN working group are Belgian PREMs and PROMs related initiatives. These initiatives can be in a development, implementation and/ or evaluation phase. By PREMs we mean instruments that measure a person’s experience with healthcare or healthcare services such as waiting time, the quality of communication with staff, the involvement of the patient in making decisions,… PROMs are questionnaires about a person’s perception of his state of health in which aspects such as symptoms, functional capacities, self-reliance, … are evaluated. PREMs/ PROMs initiatives can be undertaken for different reasons e.g.:
- patient empowerment
- ‘pay for performance’
- patient follow-up
- quality improvement
- academic-oriented objectives.
Throughout these working group meetings the need to have a national overview of other non-Sciensano PREMs/ PROMs initiatives was expressed. For that reason we created an annual abstract survey that we will send on a yearly basis to care-settings, patient associations, universities,… asking them to outline their PRM related initiatives using the items of an abstract. The results of this survey will also be presented during an annual event. During this event, keynote speakers will be invited and there will be poster presentations and workshops. In other words, this LEARN working group which started as an internal Sciensano PREMs/ PROMs working experience exchange group wants to in time evolve as a broader knowledge and experience exchange platform in which people can learn from each other, overlay can be prevented and collaboration is facilitated.