Amsterdam Gastroenterology Endocrinology Metabolism

Amsterdam UMC has started a central initiative to facilitate Patient Involvement in Research (PIR). A network has been created, with an advisory committee of experts in the field as driving members, to connect researchers, share resources, and for researchers to learn. As the importance of PIR is growing, we encourage those interested in involving patients in their research process to join the network. Register here! 

What is it and why is it important? 

Patient involvement emphasizes patients taking an active role in their own health, making informed decisions about their care, working with healthcare providers and researchers through shared decision-making, adhering to treatment plans, and using digital tools for self-monitoring and prevention. It is different from including patients as participants in your study. Patient involvement in research concerns the consultation of and collaboration with patients in the different stages of the research process, as early as the development of research questions. This is because patients bring a depth of experiential knowledge that researchers, regardless of their scientific expertise, cannot access through scientific training alone. 

What’s it to you as a researcher? 

It is a key part of citizen involvement, also known as Citizen Science, where members of the public actively contribute to scientific research. By engaging citizens in project design through open science practices and in communicating results through outreach activities, research becomes more innovative, relevant, and trustworthy. 

With increasing recognition and participation globally, including funding agencies, citizen science is increasingly recognized as a discipline in its own right. Researchers are therefore encouraged to involve citizens and citizen-led organizations in their projects, whether at a consultative level or through close collaboration, reflecting the many ways society can help advance scientific knowledge. 

In house help with patient involvement in research 

Amsterdam UMC has recently set up a network called the PIR Network. It is facilitated by a working group of research support members and guided and supported by a group of experts within Amsterdam UMC. They form our PIR Advisory Committee (PIRAC).  

The network aims to facilitate three pillars: Share, Learn, Connect. We use our dedicated SharePoint page to share symposia, courses, events, and databases (to name a few) with the network. Whenever such information is shared with us, we will feed it back to the network via e-mail. The network does not work with a regular newsletter, so members do not receive excessive notifications.  

As an example of the kind of information that is shared in the network: recently, we facilitated a greatly appreciated course given by PPI Ignite, which gave early researchers an idea of how to apply patient involvement in their research. The PIRAC is also in charge of writing the position paper on PIR for Amsterdam UMC researchers.