What role do patients and the public play in guideline development? Patient engagement is essential and part of Task Force guidelines since 2010. In recent years, the Task Force has expanded engagement opportunities for members of the public and patients in developing clinical practice guidelines and related tools. Here’s how non-clinicians are involved:
The Task Force Public Advisors Network (TF-PAN) is a panel of 21 members of the public from across Canada who provide feedback on guidelines for different health topics and diseases. This feedback helps make key messages more understandable for the public and aids in creating patient-centered tools. TF-PAN members receive training to equip them with the knowledge to give informed input.
Guideline patient partners – The Task Force recruits 2-3 patient partners to sit on the working group for select guidelines. These members of the public attend guideline working group meetings and review relevant documents. Their input is key as they participate in discussions on the evidence and review materials, providing a valuable patient/public perspective throughout guideline development.
“Patient Involvement creates the impact that becomes the imprint for change. As a triple negative breast cancer survivor and a woman of colour, having a seat at the table is the beginning of re-shaping our future for generations to come,” said Dawn Barker, a patient partner on the breast cancer working group who contributed perspectives and feedback on the updated guideline recommendations.
To produce clear and useful guideline tools, the Task Force “usability tests” them with clinicians and members of the public. Through interviews with about 8 members of the public and the same number of clinicians, we ask for feedback on the format, design and clarity of the tools, and update the tools based on this feedback.
Members of the public can also submit topic suggestions for future guidelines here.