Good Practices for Patient Involvement When Developing Clinical Practice Guidelines

While previous literature has largely focused on evaluating and providing standardized methods for developing clinical practice guidelines (CPGs), integration of patient perspectives has been inconsistent across organizations that develop and promulgate CPGs. With an increased focus on patient centricity, this study aimed to identify good practice recommendations for implementing patient engagement in the development process for CPGs.

Organizations producing CPGs and associated methodological guidance were identified and reviewed. Existing patient engagement and inclusion practices within the aforementioned documents were identified and characterized. Patient engagement and inclusion practices were qualitatively assessed based on patient involvement standards as suggested by the Institute of Medicine in 2011 and the National Health Council’s Rubric for Patient Engagement. Good practice attributes were summarized into recommendations, keeping practical application in mind.

Of 59 CPG-producing organizations identified, 19 integrated patient engagement within their methods documents. A systematic evaluation identified the following 10 good practice recommendations for patient engagement in CPG development:

  1. Keep patient committee members informed at all stages and ensure they are invited to all meetings.
  2. Additional meetings involving patient representatives should be arranged if needed to ensure patients have sufficient opportunity to discuss guideline content throughout development.
  3. Involve patients in clinical question formulation to ensure key questions that matter to patients are included.
  4. Seek out patient views and experiences to identify areas in which patient preference is of particular importance, such as for quality of life.
  5. Ensure patients have equal standing and share of voice as other members, including terms, voting, and authorship.
  6. Promote diversity regarding experiences within the healthcare system and experiences or training as “patient representatives.”
  7. Document—in detail—processes and procedures for establishing patient involvement, including the consideration of conflicts of interest.
  8. Provide reference materials and clear guidance to each patient committee member regarding their role and responsibilities.
  9. Recommend that all members of the development group use language that is appropriate and accessible to patients.
  10. Include patient involvement in checklists for the submission of guideline development protocols.

In conclusion, authors noted that organizations that develop CPGs could benefit from a codified set of patient engagement recommendations during the CPG development process.

Source:

Lee T, Desai B, Perfetto E. Patient involvement in clinical practice guideline development: ten recommended good practices. Presented at: 2022 Academy of Managed Care Pharmacy Nexus Annual Meeting; October 11-14, 2022; National Harbor, MD. Poster U6.

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