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Joseph H. Kanter Family Foundation and eHealth Initiative Foundation Launch Partnership to Conduct Research on Health Outcomes, Comparative Effectiveness

Multi-stakeholder effort will pilot a unique, distributed, electronic research network to help patients and their doctors determine which treatments work best for specific diseases and conditions

WASHINGTON, Aug. 11 /PRNewswire-USNewswire/ -- The Joseph H. Kanter Family Foundation and the eHealth Initiative Foundation (eHI) announced the launch of the Partnership for Connecting for Research on Outcomes and Effectiveness, a national effort that will create a model for using electronic health information from multiple data sources - including electronic health records - while protecting patient privacy, to offer unbiased, evidence-based guidance on what treatments work best - vital information that can improve quality and safety and drive down costs in the health care system.

Developing a nationwide public-private partnership to use electronic data for outcomes research on what works in health care has been a long-time goal for Joseph H. Kanter, chairman of the Joseph H. Kanter Family Foundation. "This Partnership represents the culmination of what was started when former Senate Majority Leaders Bill Frist (R-TN) and George Mitchell (D-ME) joined me at the Newsmaker Breakfast at the National Press Club in a bipartisan call for a system that will help patients and their doctors understand how to better treat disease," said Kanter, who is also serving as chairman of the Partnership. "Through this Partnership, we will accelerate research efforts by creating the first major pilot of a distributed research network using personal electronic health records to improve the quality and cost-effectiveness of health care for all Americans."

The need for independent outcomes and comparative effectiveness research has been trumpeted by many public and private sector leaders, including our presidential candidates, members of Congress, the Congressional Budget Office, the Institute of Medicine, the Medicare Payment Advisory Commission, the Agency for Healthcare Research and Quality, and leaders from across every sector of health care. Just this month, U.S. Senate Finance Committee Chairman Max Baucus (D-MT) and Senate Budget Committee Chairman Kent Conrad (D-ND) introduced a bill to create a private Health Care Comparative Effectiveness Institute that would be governed by a public-private sector Board.

Although the ongoing policy discussions and the introduction of new legislation are both important steps forward, an important ingredient critical to the success of developing better evidence - a distributed, electronic network to develop better empirical evidence - has garnered little attention to date. The Partnership will work with experts and health care stakeholders to explore the organizational, technical, and policy aspects of using a distributed research network that leverages electronic health records to support the independent assessment of the clinical effectiveness of various treatments. This process will also provide more concrete guidance on the different kinds of evidence needed to identify "what works best" in health care: understanding how diseases progress for particular types of patients, identifying safety problems, comparing the benefits and risks of treatment alternatives, and comparing different medical practices that may affect quality and cost--and the reforms that can affect these practices. The Partnership looks forward to working with members of Congress and other policymakers to develop a common path forward that will improve health care for all Americans.

The Joseph H. Kanter Family Foundation has engaged Mark B. McClellan, MD, Ph.D., director of the Brookings Institution Engelberg Center for Health Care Reform, former administrator of the Centers for Medicare and Medicaid Services and former commissioner of the Food and Drug Administration, to serve as an advisor to the effort. "This new partnership is a critical step for moving from the promise to the reality of better evidence that can improve health care," said McClellan. "This Partnership is a practically-grounded strategy to determine how to leverage electronic health information--such as electronic health records--to help answer key questions about how health policy reforms can promote more effective, personalized care."

The eHealth Initiative Foundation, an independent, non-profit, multi-stakeholder organization whose mission is to improve the quality, safety and efficiency of health care through information and information technology, will staff and coordinate the activities of the Partnership. This collaborative effort will draw upon eHI's members as well as others representing academic and research institutions, clinicians, consumer and patient groups, employers, health plans, hospitals and other providers, laboratories, the life sciences industry, pharmacies, public health agencies, and state and local leaders, as well as nationally recognized experts in outcomes research, informatics, and privacy to lend their support in the collaborative development of methods and strategies. The Partnership will also build upon the experience eHI has gained through its Connecting for Drug Safety Collaboration (, which is currently developing and piloting methods for using clinical and claims data to support post-market surveillance and drug safety.

"We are delighted to be partnering with the Joseph H. Kanter Family Foundation on this important initiative," said Janet M. Marchibroda, eHealth Initiative chief executive officer. "Health IT and the responsible use of anonymized electronic health information promise to considerably advance the quality, safety and effectiveness of health care in our country, not only by providing significant support to research on better evidence, but also by bringing the results of that research to doctors and their patients to help them make better health care decisions."

Over an 18-month period, the Partnership will support research to improve evidence on medical care, including the comparative effectiveness of alternative treatments and strategies for delivering care, by developing:

-- A summary and analysis of current methods for using electronic health information to support research on outcomes and effectiveness.

-- An assessment of the different data types available for such research, including but not limited to, clinical information which resides in electronic systems implemented primarily for care delivery, claims data, federal data systems, and information voluntarily provided by consumers for research--with their consent, through personal health records or other consumer-facing applications.

-- Consensus policies developed collaboratively with consumers and patients, providers, payers and researchers that will effectively address privacy and confidentiality concerns and build and maintain public trust for using electronic health information for research on outcomes and effectiveness.

-- A prototype distributed research network that tests and evaluates methods for using electronic health information for developing different kinds of evidence, while effectively protecting patient privacy.

-- A set of recommendations for the organization, governance, sustainability, privacy, and technical aspects of an operational distributed network to support outcomes and effectiveness research.

About the Joseph H. Kanter Family Foundation

The Joseph H. Kanter Family Foundation has played a critical leadership role in raising awareness of and advancing the creation of a National Health Outcomes Database, the research findings of which can be easily understood and accessed by patients and doctors. The Kanter Foundation's "Health Legacy Partnership" includes more than 300 partners including nationally recognized leaders, corporations, federal agencies, national health foundations, and stakeholders from every sector of health care. For more information, go to

About eHealth Initiative and its Foundation

The eHealth Initiative and its Foundation are independent, non-profit affiliated organizations whose missions are the same: to drive improvements in the quality, safety, and efficiency of health care through information and information technology. eHI engages multiple stakeholders, including clinicians, consumer and patient groups, employers, health plans, health IT suppliers, hospitals and other providers, laboratories, pharmaceutical and medical device manufacturers, pharmacies, public health, public sector agencies, and its growing coalition of more than 200 state, regional and community-based collaboratives, to reach consensus on and drive the adoption of common principles, policies, strategies and actions that improve health and health care through information technology that is responsible, practical, sustainable, and builds and maintains the public's trust. For more information, go to

SOURCE eHealth Initiative
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