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December 09, 2012

By Gary A. Puckrein, PhD


As our Nation enters this critical period of implementation of the Patient Protection and Affordable Care Act, we must turn our attention to assuring that the drug development process reflects the individual needs of all Americans, including people of all races and ethnicities. The biological and genetic diversity extant in the American general population opens the door to variability in metabolism of and responses to drugs that can have positive and negative effects on treatment outcomes. The extraordinarily exciting and groundbreaking research possibilities and potential for advances in health care that this diversity represents must be embraced if we are to advance our economic, social and intellectual potential as a society.

Initiatives like the National Minority Quality Forum’s National Clinical Trial Network are playing an important role in educating both the pharmaceutical research and manufacturing industry, policymakers, and the American public that the one-size-fits-all prism through which health care research, financing and delivery have been structured in the past is just that – a concept of the past, not of the future. It is essential that this nascent era of long-term innovation and progress not be undermined in the name of short-term cost cutting. Real cost savings will not be realized without a fundamental shift in the scientific underpinnings of our health system.

This critical issue will be discussed in Washington, DC on Friday, November 30 at the forum The Myth of Average: Why Individual Patient Differences Matter. The National Minority Quality Forum is one of the sponsors of this event, which will bring together academic and medical experts with high-ranking officials from the Centers for Medicare and Medicaid Services, the National Health Council, and the Patient-Centered Outcomes Research Institute. The event is being hosted by the National Pharmaceutical Council.

The Myth of Average places a spotlight on comparative effectiveness research/patient-centered outcomes research (CER/PCOR), an issue that demands more attention from the American public than it has received so far. Through the Affordable Care Act, the federal government is investing considerable resources in CER/PCOR which, a case can be made, has the potential to generate information that can assist physicians in designing more effective treatment plans for patients. However, CER/PCOR has some worrisome features that may lead to efforts to restrict coverage of and access to drugs and devices that are simply less expensive, and most effective for the elusive “average” patient. If this occurs, the harm that will be done may be irreparable.

We encourage you to constructively engage in discussions about the need to protect access to a full range of therapies and to stimulate innovation in health care research and delivery. The Myth of Average is one such discussion.

About The Forum

The National Minority Quality Forum (NMQF) is a 501(c)(3) not-for-profit, non-partisan, independent research and education organization. The vision of NMQF is a health services research, delivery and financing system that provides quality and effective health services to the biodiverse American general population of the 21st century. NMQF helps assure that national and local quality improvement initiatives are informed by scientific evidence, and place a priority on the quality of care and patient outcomes in all populations.