Organisation
Patient & Public Advisory Committee
Health data research benefits from the accessibility of high-quality health data from multiple sources. A health data-infrastructure, such as Health-RI pursues, enables this. Public support and public trust in such an infrastructure are essential, which is why the opinion of citizens (including patients) must be taken into account. This is why Health-RI installed the Patient and Public Advisory Committee that offers a societal perspective, and with that represents public interests of citizens and patients. The Committee provides constructive advice to the board and participates in various projects in Health-RI. The Patient and Public Advisory Committee aims to offer a national platform and currently includes:
- patients and patient representatives;
- citizens with affinity for health data research (infrastructure), including healthy participants in data research.
The core of the Committee meets once a month to discuss developments, form opinions, provide advice and plan further actions when needed. The complete Committee meets once every three months. Topics for discussion are current practices, problems, concerns, or new developments, either brought up by the Committee or on request of Health-RI.
Are you a patient, patient representative, or citizen with affinity for health research (infrastructure)? Please join us and get in touch with Miriam Beusink at miriam.beusink@health-ri.nl. We explicitly invite patients or patient representatives representing patient organizations to join.
Topics in 2025
The MAR is represented in the OVT working groups and the resulting projects such as the Mitz applicability study. The MAR provides advice and input on the framework letter with key points for the following year, and on the annual report of last year. The MAR reads the Health-RI wiki and provides feedback where necessary. The MAR contributes to the content of the website www.gegevensverbeterenlevens.nl and draws attention to the implementation and evaluation of public information. The MAR is organizing a working conference as a result of the societal dialogues in 2024. The MAR is paying attention to the development of the concept of 'data citizen journey' as a result of the societal dialogues in 2024. The MAR is also working on (the implementation of) legislation and organization EHDS/HDAB and (advocating for) connecting citizen generated data to the health data infrastructure.
Gegevens Verbeteren Levens: 'Burgers en patiënten aan het woord'