Implementing Affordable Care Act, Section 4302: An Overview of Federal Efforts and Implications for Data Collection

by Emilia Dunham

Reporting on “The Affordable Care Act (Part II): Section 4302 and Implications for Data Collection” call earlier this afternoon

(Webinar was sponsored by the Aetna Foundation and AcademyHealth)

On the call today David Meyers of the Center for Primary Care, Agency for Healthcare Research and Quality discussed how Section 4302 of the ACA lists requirements for data collection of disparity populations affecting prevention, public health, expansion of coverage and access to care. Here were some take-aways:

  • Data from national surveillance will be available for public research, but privacy will be maintained.
  • Department of Health and Human Services Secretary Kathleen Sebelius will establish data collection standards, calling for specific language for funding.
  • Five specific standards for data collection at a minimum: Race, Ethnicity, Primary Language, Disability Status and Sex.
    • All surveys and all agencies supported by DHHS would be required to collect for these standards.
    • Secretary Sebelius has authority to require additional standards and is considering additional categories.
    • There will be listening sessions for the public to include comments on adding additional categories such as sexual orientation and gender identity. They are asking for comments on burden versus value of adding categories.
    • Next steps: Input will be incorporated, and the DHHS Secretary will either add, reject, ask for more information or more time on new categories to include.

 What to ask in listening sessions and what feedback we should provide to the DHHS?

DHHS is looking for answers on the following questions

  • What characteristic(s) do you think should be added to the current list of race, ethnicity, sex, primary language and disability status to further address health disparities?
  • How many individuals would be affected if data addressing this topic is collected?
  • Is there evidence that a health disparity exists for this characteristic?
  • Have any instruments been developed and tested to measure this demographic characteristic? If so, please provide a brief summary of the measures and evaluation results.  If not, do you have recommendations as to the questions that should be asked or how the measures should be developed?
  • Has information on this characteristic ever been collected, presented, published, or televised? If so, where has this been done?
  • Recognizing that demographic data, especially data related to disparities, may be sensitive, elicit prejudices, and affect individual’s willingness to provide information, do you have information about how collecting information on this category may affect overall data collection activities and how to maximize data quality?
  • Do you have any recommendations as to how the Secretary should decide (i.e., what criteria should be used) whether the potential for burden of adding your proposed characteristics would outweigh the need to gather additional information to address health disparities?
  • Do you have any other recommendations with respect to any other demographic data regarding health disparities that you would like the Secretary to consider?

Feedback relating to our community

One person on the call asked whether additional populations will be captured under the current 5 categories like transgender populations. Presenters stated that sex is without a doubt not just “male” or “female”, but it’s possible that options can expanded to include “other”, “transgender” or another option. HHS is needing answers on how to expand the category of sex/gender to include transgender categories.

Next Steps:

There will be additional listening sessions though many were sent by invitation only.

The Network is having a BrownBag Webinar on Monday, November 22, 2010 at 4pm to discuss what information to submit and how to respond about adding LGBT measures for federal surveillance. Please email us with thoughts or information at or register for the call here.  See our blog post for more information.

Published by Emilia Dunham, MPP, MBA

Emilia Dunham is currently a Project Manager at MassHealth/Department of Public Health, and formerly the Project Manager of the Life Skills project at The Fenway Institute, an HIV intervention study for young transgender women. Emilia worked at Fenway for 7 years, first as a Quality Control and Regulatory Assistant mainly involved with biomedical HIV prevention trials, before serving as the Program Associate for The Network for LGBT Health Equity, a network instrumental in many national LGBT health policy improvements. She is also involved with the Massachusetts Transgender Political Coalition, serving as a Steering Committee member and the Policy Committee Co-Chair, an organization largely responsible for the recent passage of the Trans Rights Bill. Additionally she serves as a member of the Massachusetts Commission on Gay, Lesbian, Bisexual and Transgender Youth, Co-Chair of the Recommendations Committee. Emilia received a Bachelor’s degree from Northeastern University. There she served as President of the LGBTQ student group where she planned programs such as Pride Week, Transgender Day of Remembrance, and AIDS Week. In addition, she advocated for LGBTQ inclusive policies and programming on campus such as a Gender Neutral Housing program, an LGBTQ Center and the expansion of Women’s Studies to Women, Gender and Sexuality Studies. Emilia recently earned a Master of Public Policy and Master of Business Administration in health policy and management from the Brandeis Heller School School for Social Policy and Management.

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