Patient participation

Oudere man in huiskamer

The importance of the patient perspective

The experiences and perspectives of (former) cancer patients are invaluable for understanding the impact of cancer and improving care and support. They know first-hand what it means to undergo treatment and to live with and beyond cancer. By bringing in their voices, KWF can ensure that its activities truly matter and have impact for those affected by cancer.

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 most project proposals submitted to KWF Dutch Cancer Society.

Specifically, KWF asks of our PACO members:

  • That they are (former) cancer patients with a variety of indications
  • That they will assess a project specifically from a patient’s perspective; PACO members will not assess the scientific quality or technical feasibility of project proposals.
  • That they will assess projects with a degree of patient involvement or clinical perspective (and not fundamental science). Project proposals in the Exploration track will not be assessed by the PACO.
  • That they will form their opinion and advice based on questions as: 

    Relevance
    Does the objective of the project proposal align with the needs and wishes of cancer patients or the public? Does the envisaged result provide sufficient added value compared to the current 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 results, and the realisation of any necessary follow-up actions? Does the Patient Information Form (PIF) contain all relevant information that potential participants need to make an informed decision about participating in this study, and is the PIF written in language that is clear and easy to understand? Will relevant feedback about the results of the study be provided to patients

    Patient involvement
    The PACO members will also assess the involvement of patients in the design and execution of the project proposal, considering questions such as: Have patients (or patient organisations and/or representatives) been involved in the design and execution of the study?

The PACO assessment is part of the review of the project proposal and, starting in 2026, will contribute 30% to the final assessment. PACO representatives participate in the Board Review Meeting to contribute to the final project discussion. They may present and substantiate their arguments during this meeting to a committee of (scientific) experts and clinicians. If an interview is included in the review phase of a project proposal, a PACO representative will be present as well.