September 8, 2009
The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500
Dear President Obama:
The undersigned coalitions, groups, and organizations wish to express our concern with recent information indicating the possibility of eliminating data collection provisions in health reform legislation. As noted in an article published in the New York Times on September 3, 2009 titled, Obama Aides Aim to Simplify and Scale Back Health Bills, it was stated, "White House officials said Congress could also drop proposals requiring the government to create school-based health clinics and collect nationwide data on health and health care by race, sex, sexual orientation and 'gender identity.'"
As you know, data collection is essential to track use and quality of care, document disparities and tailor interventions. Without data, it will not be possible to identify and properly address disparities in health and health care in a culturally and linguistically appropriate way.
Your Administration has continued to be supportive of data collection, including provisions in the American Recovery and Reinvestment Act (ARRA). This statute requires the Department of Health and Human Services (HHS) to develop standards for collecting race, ethnicity and language data for electronic health records. The inclusion of this important provision was made with the support of your Administration and without any objection by the public or Congress.
Earlier this week, the Institute of Medicine released its report, Race, Ethnicity, and Language Data: Standardization for Health Care Quality improvement. The report, commissioned by the Agency for Healthcare Research and Quality (AHRQ), notes the need for standardizing collection of race, ethnicity and language data for quality improvement and provides a number of recommendations. The report notes, "there is strong evidence that the quality of health care varies as a function of race, ethnicity, 3lld language. Having quality metrics stratified by race, Hispanic ethnicity, granular ethnicity, and language need can assist in improving overall quality and promoting equity."
We strongly urge you to continue your ongoing support of data collection and respectfully request the inclusion of specific data collection provisions in health reform legislation. Critical provisions impacting data collection have been included in health reform legislation including those for race, ethnicity, gender identity, language, sexual orientation, and disability status. A final bill should include the data collection provisions outlined in the Senate Finance Committee's Description of Policy Options Expanding Health Care Coverage: Proposals to Provide Affordable Coverage to All Americans, Sec. 3301 from the Affordable Health Choices Act, and Title III from the Health Equity and Accountability Act of2009.
Thank you for your ongoing leadership and support of issues impacting populations and
communities that continue to suffer grave health and health care disparities. We would also like to thank you for your thoughtful consideration of this request and offer our assistance in addressing this critical issue. Please contact Daniel E. Dawes, J.D., at (202) 682-5110 or ddawes@apa.org, if you would like any additional infonnation.
Sincerely,