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Are patients participating in clinical practice guideline development?

Patient involvement in guidelines 2

According to the Institute of Medicine (IOM), patient and public involvement is necessary if clinical practice guidelines are to be reliable and of the highest standard. As part of “Clinical Practice Guidelines We Can Trust,” published by the IOM in 2011, it was recommended that patients be included in guideline development groups and that prior to publication a guideline draft should be available to both patients and the general public for review and comment. There is widespread agreement on the value of patient and public involvement in guideline generation and it is recommended by other organisations, including the Guidelines International Network.

With the importance of patient and public involvement recognised, are these recommendations being implemented in the real-world setting? Unfortunately, this does not seem to be the case. Armstrong and Bloom, from the University of Florida College of Medicine, conducted a review of US guideline developers and revealed “a substantial gap between patient/public involvement standards for guideline development and practice in the United States”. The results of this study have been published recently in Research Involvement and Engagement and Armstrong has published a summary of the research here. The authors discovered that of the 101 US-based guideline developers included in the study:

  • only 8% required patient and public involvement in guideline development
  • patient and public involvement was sometimes required or described as optional by an additional 15%
  • just 13% involved patients or the public at least some of the time during external review
  • public comment was routinely used by 24%.

Armstrong and Bloom have suggested that in order to change and improve current practices, guideline depositories such as the National Guideline Clearinghouse may need to make patient and public involvement compulsory for inclusion.


Summary by Jo Chapman, PhD from Aspire Scientific


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