Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs

Med Decis Making. 2011 Nov-Dec;31(6):E45-74. doi: 10.1177/0272989X11424401. Epub 2011 Sep 29.


Background: Reviewers independently extracted data on key components of PPIPs and barriers and facilitators to their operation. Data synthesis. Over half of the studies were published after 2002, and more than half originated from the United States, the United Kingdom, Australia, and Germany. CPGs that involved patients and the public addressed a variety of health problems, especially mental health and cancer. The most frequently cited objective for using PPIPs in developing CPGs was to incorporate patients' values or perspectives in CPG recommendations. Patients and their families and caregivers were the parties most often involved.

Methods: used to recruit PPIP participants included soliciting through patient/public organizations, sending invitations, and receiving referrals and recruits from clinicians. Patients and the public most often participated by taking part in a CPG working group, workshop, meeting, seminar, literature review, or consultation such as a focus group, individual interview, or survey. Patients and the public principally helped formulate recommendations and revise drafts. Limitations. The authors did not contact the authors of the studies.

Conclusion: This literature review provides an extensive knowledge base for making PPIPs more effective when developing and implementing CPGs. More research is needed to assess the impact of PPIPs and resources they require.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers
  • Community Participation*
  • Family
  • Humans
  • Patient Participation*
  • Practice Guidelines as Topic*

Grants and funding