11 November 2019

Anne Karien Marijnissen and Sjouke Dekker talk about patient participation in APPROACH at the UMC Utrecht, The Netherlands

Patient participation is in full swing. The way patients can participate in APPROACH is a good example. This was shown on October 16th during a duo-presentation by Anne Karien Marijnissen, researcher and international coordinator of the APPROACH-cohort (UMC Utrecht NL) and Sjouke B. Dekker, member of the patient council of APPROACH. The presentation was, amongst other duo-presentations, at the request of the societal stakeholder committee of the research evaluation of the UMC Utrecht.

In the UMC Utrecht the societal impact of research is of paramount importance: research does not only have to be of high quality, the results also have to contribute to the improvement of (the quality of) life of the patient.

The purpose of the duo-presentation was not so much intended to show the content of the research, but was more meant to showcase the way the collaboration between researchers and patient council (PC) has been organised. You can think of how both parties have come together; whom are represented by the members of the patient council; when do they meet; how do they exchange information; what subjects have been discussed and what subjects not; what are the results of the collaboration; what happened with the input of the PC; how has the research been adapted based on this input what did both parties learn from each other?

After an introduction of the APPROACH project by Anne Karien Marijnissen, PC member Sjouke B. Dekker was invited to explain the role of the PC in the project. He indicated that the PC made a substantial contribution to the research at important moments in the project, in favor of the patient participants. Additionally, the PC is a full party in the project and in the communication about it. The PC is also involved in the presentation of APPROACH to the community, as proven at this meeting about patient participation.

During the discussion with the committee (with a.o. representatives of patient organisations) the collaboration was reviewed: very positive and less positive experiences were discussed; furthermore the discussion was about what other projects can learn from APPROACH; what can be improved in APPROACH and how to proceed in the future. The area of patient participation seems to slowly develop into a specialized field, resulting in a commonly experienced problem: how to guarantee the representation of actual patients in daily practice?

In November the committee gave a positive feedback on the organisation of patient participation in research in the UMC Utrecht.