Effective and sustainable patient participation: The patient’s perspective in CF care and CF research

This thesis focuses on how the Dutch CF Foundation defined the patients’ perspective as a starting point for the improvement of quality of care and the making of a patient prioritized research agenda. Quality of care and can be improved if we take into account the patients’ perspective in a structured way. Professional and systematical involvement of patient representatives in the development of standards of care for example, paves the way for useful insights, that contribute to a golden standard if merged with the expertise of medical experts. Quality of care also improves when criteria are defined that are meaningful to the people with CF. CF centers of expertise were assessed systematically based on criteria defined by patients themselves. The program is feasible and manageable for a professional patient organization to run, and showed a high efficacy. The results of the assessment show that quality of care improves when the using the patients’ perspective in the procedure. The patient organization is also able to address specific issues with regard to people with CF, offering them early intervention if a certain problem occurs (coaching project). This program is highly effective.
The process to close the gap between the patients’ unmet needs and outcomes of relevant research is described. A wide range of conditions has been laid bare, in order to set up a patient prioritized research agenda. Acting in the best interest of the patient is no longer the ultimate task of clinicians, but also of researchers.