American Institutes for Research Leading Groundbreaking Initiative to Expand the Public’s Role in Effective Health Care Research
Washington, D.C. – The American Institutes for Research (AIR) is leading the creation of the Community Forum on Effective Health Care, a three-year initiative that will evaluate and develop approaches aimed at expanding the participation of the public and various stakeholder groups in improving the effectiveness of health care.
The goal of this initiative is to improve approaches for civic participation and to generate additional input from both the general public and from groups or individuals with an interest in a clinical, research or health policy decision. Their contributions will affect patient-centered outcomes research, which compares drugs, medical devices, tests, surgeries, or ways to deliver health care. The information generated helps patients and their families understand what treatments work best and how their risks compare, while allowing for choices for each individual patient.
The federal Agency for Healthcare Research and Quality (AHRQ) drew upon funds from the American Recovery and Reinvestment Act (ARRA) to establish and support the Community Forum. The project will expand and systematize public and stakeholder engagement in the process of identifying research needs, aspects of study design, interpretation of results, development of products, and research dissemination. The effort will design, conduct and assess various deliberative processes for eliciting public input, support a 20-member Effective Healthcare Stakeholder Group, and build upon current approaches to working with stakeholders.
“The Community Forum is an opportunity to improve the direction and the relevance of research by bringing together people with diverse perspectives and values to contribute to the research agenda,” said Marilyn Moon, AIR senior vice president and director of the Health Program. “It also creates an opportunity for members of the public and stakeholder to assure that the results of research are used to improve healthcare for all of us.”
The team working on the project is an unparalleled collaboration of partners with expertise in public engagement and deliberation, research and evaluation, patient-centered outcomes research, technology assessment, AHRQ’s Effective Health Care Program, translation of research and related complex health care information for non-technical audiences, group facilitation, and new web technology.
In addition to AIR, the project’s partners include the Center for Medical Technology Policy (CMTP), Center for Healthcare Decisions (CHCD), Consumers Union (CU), Stanford University’s Center for Deliberative Democracy (CDD), Academy Health and Polimetrix.
Experts participating in the project include: Marthe Gold of The City College of New York (CCNY); Shoshanna Sofaer of CUNY’s Baruch College; Norman Daniels of Harvard University; and Todd Davies of Stanford University. The team includes international contributors to inform on relevant experiences engaging consumers and stakeholders abroad: Ela Pathak-sen (UK) of Commotion; Ruthe Lopert (Australia), of the Therapeutic Goods Administration, Department of Health and Ageing; and Stirling Bryan (Canada) Centre for Clinical Epidemiology & Evaluation Vancouver Coastal Health Research Institute.
Established in 1946, with headquarters in Washington, D.C., the American Institutes for Research (AIR) is a nonpartisan not-for-profit organization that conducts behavioral and social science research and delivers technical assistance both domestically and internationally in the areas of health, education and workforce productivity. For more information, visit www.air.org.