Aligning patients' needs and research priorities towards a comprehensive CF research program

J Cyst Fibros. 2019 May;18(3):382-384. doi: 10.1016/j.jcf.2019.03.008. Epub 2019 Mar 26.

Abstract

The Dutch CF Foundation started to focus on scientific research thirteen years ago. The patient organization defined the patients perspective and unmet needs bottom-up, and through a structured process. The patients research priorities were matched with the research priorities of Dutch basic scientists and clinicians. The Dutch patient organization facilitated the process, in which mutual dependency between patients, scientists and clinicians is the keyword. The, at that time initiated dialogue, maintained. Subsequently a research program called "HIT CF" was composed and executed over five years. HIT CF was financially supported mainly by the patient community and some other stakeholders.

Keywords: Patient participation; Patient perspective; Research priorities.

MeSH terms

  • Attitude of Health Personnel*
  • Attitude to Health*
  • Biomedical Research* / methods
  • Biomedical Research* / organization & administration
  • Biomedical Research* / standards
  • Cystic Fibrosis / epidemiology*
  • Humans
  • Needs Assessment
  • Netherlands / epidemiology
  • Patient Outcome Assessment
  • Patient Participation
  • Program Evaluation
  • Research / organization & administration*
  • Translational Medical Research