Consumer Forum
Participating Organizations



Consumer Forum

The National Working Group on Evidence-Based Health Care presents...

Nothing About Us Without Us: Patient / Consumer Participation in Evidence-Based Health Care

On Thursday, April 19, 2007, The National Working Group on Evidence-Based Health Care hosted a live audio only webcast addressing patient / consumer involvement in evidence development and review, and translation of research findings into practice.

pdfDownload a copy of the Consumer Forum proceedings (pdf)


Welcome and Introductions
Jennifer L. Bright
Vice President, State Policy
Mental Health America

Ms. Bright will open the forum with a brief presentation about the Working Group member perspectives and its work in the evidence-based health care dialogue.

The Value of Patient Perspectives

Moderator – Bill Murphy, Epilepsy Foundation
Chris Ward
Robert Ratchford
Kay Wissmann, Y-ME
Perry Cohen, Parkinson Pipeline Project

Patient representatives will draw from their own experiences to define the importance of patient/consumer inclusion in the development, translation and dissemination of evidence for health care decision-making.

National Institute for Health and Clinical Excellence’s Efforts to Engage Patients and the Public
Andrea Sutcliffe
Deputy Chief Executive and Planning and Resources Director
National Institute for Health and Clinical Excellence

Respondent – John Bridges
Assistant Professor, Department of Health Policy & Management
Johns Hopkins Bloomberg School of Public Health

Ms. Sutcliffe will discuss the different ways in which NICE involves patients and the public in developing its health guidances. Dr. Bridges has experience in evaluating Patient-Based Health Technology Assessments (HTA) internationally. He will respond to Ms. Sutcliffe’s presentation and present his viewpoints on how patient-based HTA could be used to promote patient empowerment and patient-centered care.

U.S. Food and Drug Administration (FDA)’s Patient Representative and Patient Consultant Programs

Moderator – JoAnn Minor
Director, Patient Consultant Program
Food and Drug Administration

Theresa Toigo
Director, Office of Special Health Issues
Food and Drug Administration

Musa Mayer
Patient Participating in FDA program

Ms. Minor and Ms. Toigo will provide information about the FDA’s Patient Representative and Patient Consultant Programs which provide the FDA with insight on issues, problems, and/or questions pertinent to the viewpoint of patients and family members living with a specific serious or life-threatening disease. Ms. Mayer will discuss her personal experience as a participant in these efforts.

Communicating the Science Correctly: Agency for Healthcare Research and Quality’s John M. Eisenberg Center

Moderator – Jean R. Slutsky
Director, Center for Outcomes and Evidence
Agency for Healthcare Research and Quality

Sandra Robinson
John M. Eisenberg Clinical Decisions and Communications Science Center

Linda Golodner
National Consumers League

One of the greatest challenges is finding reliable and practical data that can inform health care decisions. The Agency for Healthcare Research and Quality’s Effective Health Care Program is dedicated to fulfilling this need through high-quality research and information dissemination efforts. Ms. Slutsky will provide an overview of the Effective Health Care Program. Ms. Robinson will present about the role of the John M. Eisenberg Clinical Decisions and Communications Science Center which compiles the research results into a variety of useful formats. Ms. Golodner will discuss the role of the National Consumers League to support AHRQ’s efforts in including consumers and patients.

Concluding Thoughts
Jennifer Bright

Ms. Bright will provide concluding thoughts and emerging principles for patient involvement in evidence-based health care.

For more information email Chin-Chin Minniear at This email address is being protected from spambots. You need JavaScript enabled to view it.

*System Requirements: