Recommendations for successful patient involvement in scientific research

30 representatives from 24 renowned Dutch organisations reached consensus on a set of 9 recommendations for successful patient involvement in scientific research. The process combined available evidence from literature with expert opinions from a patient perspective. This article is the translated version of the original paper in Dutch, that was published in the Tijdschrift voor Gezondheidswetenschappen (no. 3, 2016)


The recommendations cover the following topics:

  1. Phase of research project and patient involvement
  2. Role of patient (representative)
  3. Recruitment and selection of patient (representative)
  4. Support of patient (representative)
  5. Funding of patient participation
  6. Training of patient (representative) and researcher
  7. Evaluation of patient participation
  8. Visibility of patient participation
  9. Recognition of patients' contribution
PDF icon Recommendations for patient participation (English)

Annemiek van Rensen
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