Advancing the Evidence of Experience: Practical Issues for Patient/Consumer Inclusion
On March 6, 2008, The National Working Group on Evidence-Based Health Care hosted a live webcast addressing activities/strategies that promote patient/consumer inclusion in designing and prioritizing research, reviewing evidence, and contributing to its translation, dissemination, implementation, and evaluation.
Download a copy of the Forum proceedings (pdf) or view the session webcasts below.
Agenda & Presentations
Day 1
Overview: Share information and ideas with Working Group affiliates and other patient and consumer representatives and advocates about opportunities for engagement along the evidence-based healthcare continuum. Build a foundation for the Working Group’s Common Themes for Consumer/Patient Inclusion.
Welcome and Opening Remarks
- David Shern, President and CEO, Mental Health America
- Working group member: Bill Murphy, Director, State Government Relations, Epilepsy Foundation
View Bill Murphy's Presentation materials - Planning committee member: Jean Slutsky, Director, Center for Outcomes and Evidence, Agency for Healthcare Research and Quality
- Facilitator: Diane Dorman, Vice President, Public Policy, National Organization for Rare Disorders
View Diane Dorman's Presentation materials 
View this presentation's webcast*
Including the Voice of the Patient/Consumer: A Broad Overview of Current Efforts
Panel Objective: To highlight the various programs, initiatives and steps that have been adopted to better include and protect patients and consumers.
Speakers include:
- Jean Slutsky, Director, Director, Center for Outcomes and Evidence, AHRQ
- Richard Klein, Food and Drug Administration
View Richard Klein's Presentation materials - Abby Block, Director, Center for Beneficiary Choices, Centers for Medicare and Medicaid Services
View Abby Block's Presentation materials - View this presentation's webcast*
Keynote
- Beverly Parker, Y-ME National Breast Cancer Organization
Patient perspective - View this presentation's webcast*
Clear Messages: Importance of Information Sharing, Translation and Dissemination
Panel objective: To illustrate how organizations practice information-sharing and dissemination, and to highlight the importance of appropriate research application.
Speakers include:
- Cheryl Matheis, Director, Health Strategies, AARP
- Kay Dickersin, Ph.D., Consumers United for Evidence-Based Healthcare
View Kay Dickersin's Presentation materials - Jennifer Bright, Working Group / AHRQ Stakeholder Advisory Group
- View this presentation's webcast*
Building Patient Preference into Research Agendas
Panel objective: To illustrate what consumer/patient inclusion means within clinical research, highlight opportunities to impact research, and discuss new paradigms for patient and consumer involvement. Specific topics include: research topic prioritization, designing research that focuses on outcomes meaningful to patients, consumers and providers.
Developing Patient-Centered Research
- Simon Whitney, M.D., Baylor College of Medicine
- Sean Tunis, M.D., Director, Center for Medical Technology Policy
View Sean Tunis's Presentation materials - William Riley, Ph.D.., National Institutes of Mental Health
View William Riley's Presentation materials - Mark Gorman, The National Coalition for Cancer Survivorship
- View this presentation's webcast*
Comparative Effectiveness Policy Debate: Opportunities for Patient and Consumer Involvement
Panel Objective: To provide perspective on current policy climate around evidence-based health care and the role that the patient or consumer can play in that context
Speakers include:
- Stuart Guterman, Senior Program Director, Medicare’s Future, The Commonwealth Fund
- Tanisha Carino, Ph.D., Vice President, Evidence-Based Medicine, Avalere Health
View Tanisha Carino's Presentation materials - Bill Murphy, Working Group member and Director, State Government Relations, Epilepsy Foundation
View Bill Murphy's Presentation materials - View this presentation's webcast*
Day 2
Overview: Build from Day One’s discussion and from the Working Group’s "Principles for Patient and Consumer Inclusion" to outline how patients and decision-makers can apply the principles to meaningfully impact policy and programs.
Welcome and Review of WG Patient/Consumer Inclusion Principles
- Jennifer Bright, Working Group
- Hazel Moran, Mental Health America and Working Group
- View this presentation's webcast*
From Information to Implementation: Putting Individuals back into Healthcare Decision-making
Panel objective: Identify methods of interpreting research findings for coverage decisions, weighing the pros/cons, risks and benefits for implementation with a patient/consumer focus.
5 min overview from each panel member "how you are doing this in your system?" facilitated discussion and 15 min Q & A
- Government/Research
— Carolyn Clancy, M.D., Director, Agency for Healthcare Research and Quality - Pharmaceutical manufacturer
— Linda Harpole, M.D., Vice President, Global Health Outcomes, GlaxoSmithKline
View Linda Harpole's Presentation materials - Patient/Consumer Participant
— Margaret C. Kirk, Chief Executive Officer, Y-ME National Breast Cancer Organization - Provider
— Armin Ernst M.D., Chief Interventional Pulmonology, Director, Clinical Sponsored and Translational Research, Beth Israel Deaconess Medical Center - Payers
— Brian Sweet, Chief Clinical Pharmacy Officer, Wellpoint, Inc
— Barry Straube, M.D., Chief Medical Officer, Director Office of Clinical Standards & Quality, Centers for Medicare and Medicaid Services
View Barry Straube's Presentation materials - Research Organization
— Kristin Carman, Ph.D., Principal Research Scientist, American Institutes for Research - View this presentation's webcast*
Evidence-Based Healthcare Panel: Linking Comparative Effectiveness to Quality Improvement
Panel objective: To foster thoughtful discussion about where evidence-based healthcare is headed, how consumers / patients, regulators and decision-makers can foster success and mitigate challenges.
- Speakers as listed in the above session.
- View this presentation's webcast*
Concluding Summary on Common Themes & Adjourn
Jennifer Bright and Diane Dorman
*System Requirements:
- Windows Media Player for Windows Users
- Flip4Mac plug-in for Mac Users
This program is supported in part by Mental Health America, The National Working Group on Evidence-Based Health Care and GlaxoSmithKline.
