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Involve citizens and patients in health data exchange and data infrastructures - Data from citizens and patients is the fuel for innovation
On 6th October, the annual Health-RI congress will take place. With this year’s theme of Setting data in motion, one of the sessions will focus on Unfolding a learning healthcare system: How to inform, involve, and interact with citizens?
Citizens and patients are important stakeholders when it comes to (re)using health data, and setting up a digital infrastructure to exchange health data. After all, it is their data that is involved. Health data from citizens and patients are the fuel for improvement and innovation in healthcare.
What are best practices for the continuous involvement of citizens and patient(group)s? What to communicate to citizens and patients, and how to facilitate interaction and meaningful involvement? What do citizens and patients themselves find important? These are some of the questions during the session Unfolding a learning healthcare system: How to inform, involve, and interact with citizens.
Anne-Lotte Beckers and Tieneke Schaaij-Visser (Health-RI) will organize a session at the conference of Health-RI on Thursday 6th October about how citizens and patients can be involved in research and innovation in healthcare, and specifically around the themes of health data, data exchange and personalized medicine. “Without the (re)use of health data, improvement and innovation in healthcare is impossible. The use of data, medical images and human tissue is indispensable for research and innovation, and patients and citizens must be given a voice and be seen as important partners,” says Tieneke Schaaij-Visser.
In this session, among other things, the Public and Patient Advisory Committee (Maatschappelijke Adviesraad) of Health-RI and the experiences of patientorganizations regarding patient participation are explained. This session offers (best) practices and expert opinions and facilitates the discussion on how citizens and patients (groups) can be systematically involved in data exchange and reuse of health data. The session will also focus on the European Health Data Space, the European draft legislation on health data, and the components in the EHDS where the EU considers it important to involve patients and citizens.
Register for the session Unfolding a learning healthcare system: How to inform, involve, and interact with citizens? and the Health-RI congress can be done via the event website.