Our patient advisory group has been advising the lab on the Comprehensive Self-Management Intervention for Inflammatory Bowel Disease. Together, we have written a manuscript which highlights best practices for patient advisory groups. Here are the five key themes that we found:
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Lived Experience: Patients’ firsthand experiences provided valuable insights that enriched the research.
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Diversity and Representation: Ensuring a diverse group of participants helped capture a broad range of perspectives.
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Purposeful Engagement: Intentional and meaningful involvement of patients led to more relevant research outcomes.
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Positive Impact: Both patients and researchers found the collaboration beneficial, noting improved communication and study relevance.
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Areas for Improvement: Suggestions were made to enhance the Patient Advisory Group’s effectiveness, such as clearer communication of how patient feedback influences research decisions.
We will be developing additional patient advisory groups in the future. Please reach out if you are interested in learning more.