Engaging cancer patients in clinical practice guideline development: a pilot study

Area of Science:

• Oncology
• Health Services Research
• Patient Engagement

Background:

• Patient engagement is crucial for high-quality cancer guideline development.
• Optimal strategies for involving patients in guideline creation are not well-defined.
• Cancer Care Ontario's Program in Evidence-Based Care (pebc) evaluated two distinct patient engagement models.

Purpose of the Study:

• To assess the feasibility and efficacy of two patient engagement models in cancer guideline development.
• To compare patient and working group member satisfaction with different engagement approaches.
• To identify challenges and areas for improvement in patient involvement strategies.

Main Methods:

• Model 1: Patients actively participated as working group members.
• Model 2: Patients served in a separate consultation group for feedback.
• A control group used the standard pebc patient engagement process; satisfaction was measured via surveys over one year.

Main Results:

• Three guideline projects utilized Model 1, six used Model 2, and one served as a control, involving 14 patients total.
• Most participants reported satisfaction with their experience across both models.
• Challenges included patient recruitment and meeting wait times (Model 1), and focus and attendance issues (Model 2).

Conclusions:

• Both tested patient engagement models are feasible and effective for cancer guideline development.
• Modifications are necessary to enhance sustained patient interest and optimize the engagement process.
• The pebc will leverage these findings to refine its patient engagement strategy.