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Published: August 2010

Data collection provisions in health law ensure equal access and care

Coalition: Campaign for Better Care

In a letter to Congress, Consumer Action and other consumer organizations voiced strong support for a provision in the Patient Protection and Affordable Care Act (PPACA) that mandates collection of data on race, ethnicity, sex, primary language, and disability status in order to ensure disparities in health care access and quality for vulnerable populations.

Below is the full text of the letter:

The undersigned organizations, dedicated to the eradication of health disparities and the promotion of health equity, are writing to express our strong support for the immediate implementation of Section 3101—Data Collection, Analysis, and Quality of the Patient Protection and Affordable Care Act, PL 111- 148. This section requires that, no later than 2 years after the date of enactment of PPACA, any federally conducted or supported health care or public health program, activity or survey (including Current Population Surveys and American Community Surveys conducted by the Bureau of Labor Statistics and the Bureau of the Census) collects and reports to the extent practicable data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or participants.

As PPACA is implemented, more individuals will obtain coverage and changes to the health care delivery system will improve quality. It is essential that data on race, ethnicity, sex, primary language, and disability status are collected to ensure disparities in health care access and quality are identified and addressed, and that programs are designed from the outset to serve the most vulnerable populations. The Institute of Medicine in its groundbreaking report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, included data collection and monitoring as a key recommendation to identify factors associated with health disparities, help health plans monitor performance, ensure accountability to enrolled members and payors, improve patient choice, allow for evaluation of intervention programs, and help identify discriminatory practices. Similar data collection provisions were included in the bipartisan health equity legislation, S. 1576 (Kennedy/Cochran)/H.R. 3333 (Jackson), and H.R. 3014 (Solis) introduced in the 110th Congress. This data collection is also a critical component for ensuring enforcement of Section 1557, the nondiscrimination provisions in PPACA.

In order to facilitate the immediate implementation of Section 3101, we urge you to:

• Strike the section that conditions implementation of Section 3101 on direct appropriation of funds. Section 3101(g) authorizes such sums as may be necessary for each of fiscal years 2010 through 2014 for the purposes of carrying out Section 3101. However, the following section 3101(h) states that: “notwithstanding any other provisions of this section, data may not be collected under this section unless funds are directly appropriated for such purpose in an Appropriations Act.” Subsection (h) is unnecessary and ostensibly blocks HHS from taking any steps to collect the critical data it needs to provide quality care for all communities and address disparities in health status. We urge you to include language in appropriations legislation to strike this provision so that there is no question that HHS may allocate existing resources and begin implementation immediately.

• Appropriate $50 million in FY 2011 to begin implementation of Section 3101. We recognize that to implement Section 3101, appropriate resources must be allocated either directly or as part of existing programs. We propose that $50 million be appropriated for implementation within the Agency for Healthcare Research and Quality (AHRQ), the Centers for Medicare & Medicaid Services and the Office of Minority Health, three agencies that play an integral role in addressing disparities and assuring high quality health care.

• Adopt the Institute of Medicine standards for collection of ethnic subgroup and language needs. Section 3101(a)(2) requires the Secretary to develop data collection standards including for sex, primary language, and disability status. In 2009, the IOM was commissioned by AHRQ to develop standards for collection of race, ethnicity and language data. The report, Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement, recommended variables for standardized collection of race, ethnicity, and language need, including that HHS develop and make available nationally standardized lists for granular ethnicity categories, and spoken and written languages, as well as rules for aggregating granular ethnicity categories to the broader OMB race and Hispanic ethnicity categories. These standards should be adopted by HHS for use by all public health and health care agencies that are either Federally supported or conducted.

Requiring that these data are collected, reported, analyzed and disseminated is consistent with the goal of transparency and accountability of the public health and health care systems. We urge you to prioritize the above recommendations through the appropriations process for FY 2011 and FY 2012.

Lead Organization

National Partnership for Women and Families

Other Organizations

Aetna Alliance for Prostate Cancer Prevention (APCaP) | American Association of People with Disabilities | American Association of University Women (AAUW) | American Association on Health and Disability | American Cancer Society | Cancer Action Network | American Congress of Obstetricians and Gynecologists | American Dance Therapy | Association American Heart Association | American Nurses Association | Americans for Democratic Action | Amputee Coalition of America | Asian & Pacific Islander | American Health Forum | Association for Ambulatory Behavioral Healthcare | Association of Clinicians for the Underserved | Association of Professional Chaplains | Association of University Centers on Disabilities | Bazelon Center for Mental Health Law | Bronx Health REACH | California Pan-Ethnic Health Network | California Public Health Association-North (CPHA-N) | California Rural Legal Assistance Foundation | Catholic Healthcare West | Center for Immigrant Healthcare Justice CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder | Coalition on Human Needs | CommonHealth ACTION | Community Catalyst | Council on Social Work | Education Disciples | Justice Action Network | (Disciples of Christ) Easter Seals | Faithful Reform in Health Care | Families USA | Having Our Say Coalition | Japanese American Citizens League | Ke Ali`i Maka`ainana Hawaiian Civic Club | Khmer Health Advocates, Inc | La Clinica del Pueblo | La Fe Policy Research and Education Center | Learning Disabilities Association of America | National Asian American Pacific Islander Mental Health Association | National Asian Pacific American Families Against Substance Abuse | National Asian Pacific American Women's Forum | National Association of Pupil Services Administrators | National Association of School Nurses | National Black Nurses Association | National Congress of the American Indians | National Council of Asian and Pacific Islander Physicians | National Council of Jewish Women | National Council of La Raza | National Education Association | National Health Law Program | National Minority Quality Forum | National Multiple Sclerosis Society | National Partnership for Women & Families | National Women's Law Center | New Jersey Association of Pupil Services Administrators | Northwest Federation of Community Organizations | OCA | Out of Many, One | Papa Ola Lokahi, Native Hawaiian Health Board | Pennsylvania Prostate Cancer Coalition (PPCC) | Premier Healthcare Alliance | Raising Women’s Voices for the Health Care We Need | REACH Charleston and Georgetown (SC) Diabetes Coalition | REACH Southeastern | African American Center of Excellence for Elimination of Disparities | RESULTS | Society for Public Health Education | Society of Professors of Child and Adolescent Psychiatry | Sullivan County Public Health Services (NY) | The National Consumer Voice for Quality Long-Term Care | The Praxis Project

More Information

H.R. 3590, the Patient Protection and Affordable Care Act (PPACA)

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