Consumer Engagement in Guideline Development

Barbara E. Warren, Psy.D.

Steering Committee Consumers United for Evidence based Healthcare

Recruitment :

What’s in it for you and your organization?

• You have the opportunity to give input on behalf of consumers, making a meaningful contribution to guidelines which will advise clinicians in their practice of medicine. • You will broaden your horizons through the training you will receive on the guidelines development process and your part in it. • You can take your experience back to your organization, informing members about this process and the possibility for others to participate. • Your training and experience will prepare you for future guidelines collaboration!

Workload: What is required of you?

• Participate in 3-4 phone calls, usually held evenings after work. • Read, in advance, materials that will be sent to you. • In the case of the American Academy of Otolaryngology (AAO-HNSF), attend one or two in-person meetings (1 ½ days) in Alexandria, VA. Your travel and lodging expenses will be entirely covered by the AAO-HNSF, plus they feed you fabulous lunches and dinners! • Don't be concerned that you will be given a lot of writing and reading that you do not have qualifications to understand or the time to read - everyone volunteers for the limit of what they can do.

Knowledge:

What do you need to know to participate?

• You need to know how to take a consumer perspective and be willing to comment on how a patient would feel or think, or what they might need to know about each guideline for treatment that is being considered and recommended. • You do not have to have any specific medical training or direct personal experience with the condition or disease topic –

just be willing to wear your patient/consumer hat

and be an active, engaged consumer who can help providers develop guidelines that are consumer/patient inclusive and relevant to a potential patient’s needs and concerns. • Previous experience in actually doing guideline development is not necessary.

Preparation : What training will you receive?

• • The AAO-HNSF trains everyone on how to participate .

Barbara Warren and Rebecca Burkholder (both CUE Steering Committee members) have guideline development experience and are willing to guide and coach you and answer any questions before you volunteer or during the process. You can contact them with questions: Barbara Warren ([email protected] ) and Rebecca Burkholder ([email protected] )

More Resources

• Watch the video by AAO-HNSF’s Dr. Richard Rosenfeld about consumer involvement at http://us.cochrane.org/serving-clinical practice-guideline-panel • Take the free, online course, Understanding Evidence-based Healthcare: A Foundation for Action http://us.cochrane.org/understanding evidence-based-healthcare-foundation-action

Will your consumer voice be valued and really included?

• You, the consumer, will not be left to the side – the AAO-HNSF process engages everyone equally and with respect. • The AAO-HNSF tries to always have two consumer representatives on each panel so that you will not be the sole consumer/patient voice in the room.