Examples of successful participation

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Work, steering and project groups

“For me, U-BIOPRED was the first international study in which patients (or patient organisations) from all over Europe were full partners. They had a seat in the Patient Input Platform (PIP), the Ethics Committee, the Safety Monitoring Board, the Scientific Committee and in all 10 Workpackages. This proved to be decisive for the success of the project as the patient perspective proved to be indispensable in the scientific design and dissemination of the results. I therefore regularly recommend this advanced way of patient participation to colleagues in the Netherlands and Europe.” (emeritus prof. Peter Sterk, principal investigator U-BIOPRED.)

Focus group

The U-BIOPRED project organised a focus group in the design phase of the study. The study design included patients with severe uncontrolled asthma, who were asked to stop their asthma medication once their asthma was stable. This design was presented in the focus group with asthmatics. “They were shocked. They said that once they finally experienced a period of stable asthma, they really weren't going to stop taking their medication. That would make the risk of a lung attack very high. And this would also make it very likely that patients would quickly drop out of the study due to illness.” (The importance of patient involvement in clinical trials, Hamerlijnck, experiential expert.)

As a result of this patient response, the study design was modified so that patients with severe uncontrolled asthma could still be safely included.

Patient Advisory Panel

A patient advisory panel has been set up in a study into a smart asthma inhaler at the LUMC. This panel meets every three months and has an advisory role. As such, they, for example, assess whether research is not too burdensome for test subjects and whether the invitation letter is in line with the perception of asthma patients. “We really work together towards a common goal. If the panel ultimately approves your ideas, it confirms that you're on the right track. And that gives new energy!” (Charlotte Poot, lung researcher LUMC)

Patient Advisory Council

During a meeting of the permanent Patient Advisory Council of the research department, a question was asked about the desired form of information. "Patients can think along well about how they want to receive certain information, for example whether they want to be explained the operation of a bronchoscopy with a video, photos or a leaflet." (Machteld Hylkema, lung researcher UMCG)

Sterk Participatie Prijs

Since 2018, the Lung Foundation Netherlands awards a prize to researchers who make patient participation an essential part of their research: the Sterk Participatie Prijs. Here, it is all about an active role for patients in the design, supervision and reporting of the research.