February 25, 2009
Carolyn M. Clancy, MD
Administrator, AHRQ and Member Federal Coordinating Council for Comparative Effectiveness Research
Dear Dr. Clancy:
As you prepare to implement the comparative effectiveness provisions of Title VIII of the American Recovery and Reinvestment Act of 2009 and prepare the June 30th report on research schedules, we urge you to give priority to research that will help eliminate racial and ethnic disparities in care that have for far too long shamed the American healthcare system.
Because of past government actions (such as the infamous Tuskegee experiments), well documented inferior clinical outcomes and denied and delayed care, under-representation in clinical trials, many in the nation’s minority and ethnic communities are skeptical of the quality of care they receive and question government efforts to identify the most effective care. Comparative effectiveness research, and the movement to evidence-based medicine, is a golden opportunity to help address disparities in healthcare.
Almost daily we see new reports on harmful disparities, and many of these reports call for further research to identify why, exactly, more effective care is not being provided. For example, this February the Archives of Surgery contains an article on “Hospital Teaching Intensity, Patient Race, and Surgical Outcomes,” by Jeffrey Silber et al. that reconfirmed the fact that patients do better at teaching-intensive hospitals—but not African Americans. Exactly why? As another example, the January/February issue of Health Affairs contains an article “A Matter of Race: Early-Versus Late-Stage Cancer Diagnosis,” by Beth Vernig et al. The article notes that even where African Americans have an early diagnosis advantage, they do not have better survival rates. Why?
To eliminate disparities and create trust in the healthcare system, we hope you will give priority to studies that examine diseases that disproportionately impact racial and ethnic minorities (e.g., diabetes, end-stage renal disease, etc.), that detect differences in treatment, and publicize the most effective, best standards of care for those diseases for all Americans.
A priority should also be ensuring that in all future trials, minority populations and older persons with co-morbidities are fully representative of the national population likely to receive the treatment. To date, minorities and those most likely to use many new medicines have been vastly under-represented in clinical trials. A 2004 AHRQ-funded report noted that in Alzheimer’s disease trials, only 5 of 59 industry-funded trials reported results in African-Americans. In 2008 when the physician groups ACP-AAFP reviewed this situation, nothing had changed. We hope that P.L. 111-5 monies can be spent to identify disease areas that disproportionately impact minorities and where the clinical trial data on minorities is particularly weak. New research should then be concentrated on these areas to ensure that we are identifying the most effective treatment for all our residents.
Thank you for your consideration of these views.
Health Policy Analyst