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National Working Group on Evidence Based Health Care Gathers Leaders For Dialogue on
Restoring Patient Voice in Healthcare Decision-Making

Video Webcast Now Available Online


Contact: Jason Halal, (703) 797-1943,
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ALEXANDRIA, Va. (March 17, 2008) –On March 6 and 7, 2008, the National Working Group on Evidence Based Health Care convened leading experts to promote patient/consumer inclusion in public policy decisions about healthcare. 

A two-day forum organized by the Working Group, “Advancing the Evidence of Experience: Practical Issues for Patient/Consumer Inclusion,” brought together healthcare policy-makers, researchers, healthcare providers, payers, and patient and consumer advocates for an open dialogue on the role of patients/consumers in all aspects of the evidence-based healthcare process. Full reports on forum themes and proceedings and a video webcast of both days, is available at:  

“We cannot continue to make healthcare policy based on average group differences” said David L. Shern, Ph.D., President and CEO of Mental Health America, the chair organization of the Working Group. “We need to understand individual differences and explore how to constrain healthcare costs while improving the quality of care.” 

Participants in the forum concluded that:

  • All stakeholders have a role to play in advancing the goals of evidence-based healthcare through interactions with healthcare providers, advocacy and awareness-raising activities, and partnerships with organizations throughout the research continuum. 

  • Supporters of evidence-based healthcare need to establish a common language that clearly defines the terms consumers, patients, evidence, healthcare quality, and value. 

  • Greater focus is needed on identifying best methods for including patients in translating, disseminating and implementing evidence to ensure that research is useful for policy-making. 

The National Working Group on Evidence Based Healthcare represents consumers, caregivers, practitioners and researchers committed to promoting accurate and appropriate evidence-based policies and practices that improve the quality of healthcare services in the United States. The Working Group includes over 40 patient and disease advocacy groups including Mental Health America, The Carter Center, The Epilepsy Foundation, Y-ME National Breast Cancer Organization, American Psychiatric Association and the National Association For Continence.

Through this forum and other activities, the Working Group informs policymakers and the public about the importance and appropriate use of evidence in public policy decisions. Through education and advocacy, the Working Group works to balance the application of scientific research and real-world clinician expertise, particularly the perspectives and preferences of patients and consumers.

“If regulators and government officials advance a clinical effectiveness research agenda that speaks to only those disease states affecting very wide patient populations, many patients, including those affected by rare diseases, might be left out of the equation,” said Diane Dorman, Vice President of Public Policy at the National Organization for Rare Disorders (NORD), and a member of the Working Group. “An equitable balance must be found to deal with competing interests - no one voice can be shut out.” 

Moving forward

The Working Group commissioned research to evaluate various models of patient/consumer engagement and identify a variety of best practices. “Patients and Consumers Ensuring Dynamic Clinical Research,” which will be released in April, will inform patient/consumer inclusion in evidence-based healthcare, especially in the wake of current policy discussions about the establishment of a new research entity to generate comparative effectiveness information. For more information on the report, contact Hazel Moran at This email address is being protected from spambots. You need JavaScript enabled to view it.

To get involved with the National Working Group on Evidence-Based Healthcare, or for more information, including resources, tools and a list of upcoming events, please visit


Mental Health America is the country’s leading nonprofit dedicated to helping all people live mentally healthier lives. With more than 320 affiliates nationwide, we represent a growing movement of Americans who promote mental wellness for the health and well-being of the nation – everyday and in times of crisis.