Patient participation in KWF Dutch Cancer Society
The importance of the patient perspective
Patients are the primary parties benefiting from KWF’s activities, and they have first-hand experience with undergoing cancer treatments and living with cancer. These experiences form valuable and essential input when fighting cancer and establishing the relevance of KWF’s activities.
Review by the Patients’ Advisory Committee (PACO)
During the review process, the Patients’ Advisory Committee (PACO) will be a part of the review process for all project proposals submitted to KWF Dutch Cancer Society, with the exception of project proposals in the Exploration track. PACO members are (former) cancer patients with a variety of indications and stages of the disease and higher education qualifications or experience. PACO members will not assess the scientific quality or technical feasibility of project proposals. PACO members form their opinion and advice based on questions as:
Relevance: does the objective of the project proposal match the needs/wishes of cancer patients or the public? Does the envisaged result offer sufficient added value compared to the existing situation?
Feasibility: is the burden placed on participants in the study acceptable in light of the envisaged result? Has sufficient attention been given to ethical aspects, the implementation of the results, or the realisation of any necessary follow-up action? Does the Patient Information Form (PIF) contain all the relevant information for potential participants in order to be able to make an informed decision about participation in this study, and is the PIF written in language that is easy to understand and read? Will relevant feedback be given to the patients about the results of the study?
Patient involvement: the PACO members will also look at the involvement of patients in the design and execution of the project proposal based on such questions as: have (organisations and/or representatives of) patients been involved in the design and execution of the study?
The PACO advice will be included in the review of the project proposal, alongside the external peer review reports. Members of PACO will join the Board Review Meeting to ensure that PACO’s arguments are interpreted correctly, and will substantiate arguments and discuss the project proposals where necessary. If an interview is part of the review phase of a project proposal, a PACO member will also be present.