Participating Organizations



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.

pdfDownload 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

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:


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:

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

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:

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

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
  • webcastView 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.

Concluding Summary on Common Themes & Adjourn
Jennifer Bright and Diane Dorman

*System Requirements:


This program is supported in part by Mental Health America, The National Working Group on Evidence-Based Health Care and GlaxoSmithKline.