Disclosure of Interests (last 3 years) Barbara E. Warren, Psy.D. I certify that, to the best of my knowledge, no aspect of my current personal or professional situation might reasonably be expected to affect significantly my views on the subject on which I am presenting,

Effective Patient Engagement in Guideline Development: Who, Why and How ? Barbara E. Warren, Psy.D. Steering Committee, Consumers United for Evidence-Based Healthcare ( CUE ) US Cochrane Center Director, LGBT Programs and Policies, Office for Diversity and Inclusion Mount Sinai Health System, New York City

What does it mean to be a consumer? What is the difference between a consumer advocate and a consumer patient/client? What do the terms consumer-authenticity and lived experience mean in reference to consumer representatives? What considerations need to be made to help consumers gain traction in highly professionalized environments? How do we ensure that consumer contributions are noted, valued, and celebrated?

What are some ethical dilemmas that might arise in situations involving consumer representatives? Exploitation and tokenism Misrepresentation Consumer/professional relationship boundaries Dual or multiple roles (see two hatters) Disclosure and confidentiality Double standards (professional vs. consumer) Others

What support do consumer representatives need to function ethically and effectively in their assigned roles? Orientation, training, mentoring Disclosure and safety issues Roles and boundaries Ethical issues Relevance, competence Access to resources (organizational, informational, instrumental, etc.) Emotional support Other

“Two hatter”: a person who qualifies and may identify as a consumer, but is also a professional in the field. In what context would it be acceptable or optimal for a two hatter to assume a consumer role? Context in which no other consumers are available Context in which professional credibility is valued and listened to Context in which professional perspective will enhance or add clarity to point of view

What specific roles can a two-hatter assume when representing with other (non-two hatter) consumers? Organizer Facilitator Role model Coach or mentor Summarizer Contextualizer

KNOWLEDGE: What do consumers need to know to participate? 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. just be willing to wear a patient/consumer hat Consumers do not have to have any specific medical training or direct personal experience with the condition or disease topic – just be willing to wear a 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.

For Everyone Serving on Guideline Panels Multi-stakeholder approach Consensus building approach More than one consumer : a consumer advocate and a patient with the actual condition Leveling the playing field for everyone: An introduction and orientation for all participants in the process including understanding the meaning of actionable guideline statements, presenting the level of evidence; the role of the patient preference in each guideline recommendation ; equal participation including reading, reviewing and writing assignments

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

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