Examples of successful patient involvement

Working groups, steering committees and project groups

“For me, U-BIOPRED was the first international research project in which patients and patient organisations from across Europe were fully involved as partners. They were represented on the Patient Input Platform (PIP), the Ethics Committee, the Safety Monitoring Board, the Scientific Committee and in all ten work packages. This proved crucial to the success of the project, as the patient perspective was invaluable to both the scientific design of the study and the dissemination of its results. I regularly recommend this advanced approach to patient involvement to colleagues in the Netherlands and across Europe.”
— Emeritus Professor Peter Sterk, Principal Investigator, U-BIOPRED

Focus group

The U-BIOPRED (in Dutch) project organised a focus group during the study design phase. The original study design involved recruiting patients with severe uncontrolled asthma and asking them to stop taking their asthma medication once their asthma was stable.

When this design was presented to a focus group of people with asthma, their response was clear:

“They were shocked. They explained that if they finally experienced a period in which their asthma was stable, they certainly would not stop taking their medication. Doing so would put them at a high risk of an asthma attack. It would also make it much more likely that patients would have to withdraw from the study due to illness.”
— Hamerlijnck, patient expert, The Importance of Patient Involvement in Clinical Trials

Based on this feedback, the study design was adapted so that patients with severe uncontrolled asthma could be included safely.

Patient advisory panel

A patient advisory panel was established as part of a LUMC study on a smart asthma inhaler. The panel meets every three months and advises the research team. For example, its members assess whether participation in the study may be too burdensome for research participants and whether invitation letters are appropriate and understandable for people with asthma.

“We are genuinely working together towards a shared goal. When the panel supports your ideas, it confirms that you are on the right track. And that gives you renewed energy!”
— Charlotte Poot, lung researcher, LUMC

Patient advisory board

During a meeting of a research department’s permanent Patient Advisory Board, patients were asked how they would prefer to receive information.

“Patients can provide valuable input on how they would like information to be presented—for example, whether they would prefer the procedure for a bronchoscopy to be explained through a video, photographs or a leaflet.”
— Machteld Hylkema, lung researcher, UMCG

Sterk Participatie Prijs

Since 2018, Longfonds has presented the Sterk Participatie Prijs to researchers who make patient involvement an integral part of their research. The award recognises research in which patients play an active role in the design, conduct and reporting of the study.

Back to ‘What is patient involvement?’