Reconsidering patient participation in guideline development

Health Care Anal. 2009 Sep;17(3):198-216. doi: 10.1007/s10728-008-0099-3. Epub 2008 Dec 20.


Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered.

MeSH terms

  • Decision Making
  • Humans
  • Patient Participation / methods*
  • Patient-Centered Care / methods*
  • Physician-Patient Relations
  • Practice Guidelines as Topic*