The Affordable Care Act (Part II):
Section 4302 and Implications for
Data Collection
David Meyers, M.D., Agency for Healthcare Research and Quality (AHRQ)
José J. Escarce, M.D., University of California, Los Angeles School of Medicine; RAND
November 18, 2010
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Learning Objectives

The goals of this session are to:
– Provide an overview of general provisions in the
Affordable Care Act that address health disparities
– Review the implications for data collection addressed
in Section 4302 of the Affordable Care Act
– Provide an overview of the next steps in
implementation, and discuss steps that have been
taken to encourage public engagement on data
collection and reporting issues
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Welcome
Anne C. Beal, M.D., M.P.H.
President
Aetna Foundation
Faculty
David Meyers, M.D.
Director
Center for Primary Care
Agency for Healthcare Research and
Quality
Faculty
José J. Escarce, M.D. PhD.
Professor of Medicine, David Geffen school of
Medicine at UCLA
Senior Natural Scientist, RAND Health
Implementing Affordable Care Act
Section 4302:
An overview of federal efforts
David Meyers, M.D.
Director, AHRQ Center for Primary Care
AcademyHealth and Aetna Foundation Webinar
November 18, 2010
Disclosure
 I have no financial interests to disclose
Credibility
 I have no financial interests to disclose
Credibility
 I have no financial interests to disclose
 Clinician
– Practiced full-scope family medicine in a
community health center in SE
Washington, DC
Credibility
 I have no financial interests to disclose
 Clinician
 Researcher
– Focused on answering questions relevant
to the care of the community I served
Credibility
 I have no financial interests to disclose
 Clinician
 Researcher
 Policy advocate
Credibility
 I have no financial interests to disclose




Clinician
Researcher
Policy advocate
Bureaucrat
Disclosure
 The content of this presentation reflects
the opinions of the presenter and does
not necessarily represent the official
positions of AHRQ or the US
Department of Health and Human
Services.
Presentation Overview
 Setting the context: The ACA and health
disparities
 Review of Affordable Care Act Section 4302:
Data collection to understand health
disparities
 Brief overview of federal implementation of
Section 4302
 Opportunity for feedback
– Response from Dr. Escarce
– Questions and comments from Webinar
participants
The Affordable Care Act
and Health Disparities
 Expansion of insurance coverage
 Improved access to care
 Focus on quality
 Focus on prevention
 Focus on public health
The Affordable Care Act
and Health Disparities





Expansion of insurance coverage
Expansion in access to care
Focus on quality
Focus on prevention
Focus on public health
 For more details, please listen to the first
webinar in this series:
The ACA: Impacts and Opportunities for
Disparities Research on AcademyHealth’s
website
The Affordable Care Act
and Health Disparities





Expansion of insurance coverage
Expansion in access to care
Focus on quality
Focus on prevention
Focus on public health
 Attention to data collection and reporting
– Section 4302
The Affordable Care Act
Section 4302
Understanding Health Disparities:
Data Collection and Analysis
Overview
 Section 4302 has two main sections
– (a) Federal national data collection efforts
and the analysis and reporting of this data
– (b) Medicaid and CHIP
Overview
 Section 4302 has two main sections
– (a) Federal national data collection efforts
and the analysis and reporting of this data
– (b) Medicaid and CHIP
Part (a) of Section 4302
 Requires the DHHS Secretary to establish
data collection standards
 Calls for the use of the standards in federal
data collection
 Instructs that the data be used for analyses
and that the results be reported
 Contains some important language about
funding
Part (a) of Section 4302
 Requires the DHHS Secretary to establish
data collection standards
 Calls for the use of the standards in federal
data collection
 Instructs that the data be used for analyses
and that the results be reported
 Contains some important language about
funding
 Disclaimer: During today’s overview, I will not
be covering all of the details and nuances of
this complex piece of legislation.
Establishing Standards
 Requires the DHHS Secretary to
establish data collection standards for
five specific demographic categories:
–
–
–
–
–
Race
Ethnicity
Sex
Primary language
Disability status
Data Standards
 Must be for self-reported measures
– Or for parents to report for children and
guardians to report for legally incapacitated
adults
 Must comply with OMB standards
– The law states current OMB standards for
race and ethnicity must be used at a
minimum
Implications of Self Report
 The creation of standards for self
reported demographic measures may
suggest that the intent of the law is:
– to guide data collection from surveys of
individuals,
– possibly to apply to data collected at
program enrollment,
– not focused on administrative data.
Use of the Data Standards
 Affordable Care Act Section 4302 begins:
The Secretary shall ensure that, by not
later than 2 years after the date of
enactment of this title, any federally
conducted or supported health care or
public health program, activity or survey
collects and reports, to the extent
practicable data on race, ethnicity, sex,
primary language, and disability status
Use of the Data Standards:
Which Standards
 Affordable Care Act Section 4302 begins:
The Secretary shall ensure that, by not
later than 2 years after the date of
enactment of this title, any federally
conducted or supported health care or
public health program, activity or survey
collects and reports, to the extent
practicable data on race, ethnicity, sex,
primary language, and disability status
Use of the Data Standards:
By When
 Affordable Care Act Section 4302 begins:
The Secretary shall ensure that, by not
later than 2 years after the date of
enactment of this title, any federally
conducted or supported health care or
public health program, activity or survey
collects and reports, to the extent
practicable data on race, ethnicity, sex,
primary language, and disability status
Use of the Data Standards:
Applies to What
 Affordable Care Act Section 4302 begins:
The Secretary shall ensure that, by not
later than 2 years after the date of
enactment of this title, any federally
conducted or supported health care or
public health program, activity or survey
collects and reports, to the extent
practicable data on race, ethnicity, sex,
primary language, and disability status
Use of the Data Standards:
An Important Guide
 Affordable Care Act Section 4302 begins:
The Secretary shall ensure that, by not
later than 2 years after the date of
enactment of this title, any federally
conducted or supported health care or
public health program, activity or survey
collects and reports, to the extent
practicable data on race, ethnicity, sex,
primary language, and disability status
An Additional Focus on
People with Disabilities
 Section 4302 calls for specific new data
collection activities around the care of people
with disabilities [(a) 2 D i-iii]
– locations where individuals with disabilities access
primary, acute, and long term care
– the number of providers with accessible facilities
and equipment to meet the needs of the
individuals with disabilities
– the number of employees of health care providers
trained in disability awareness and patient care of
individuals with disabilities
Expanded Demographic
Categories
 Section 4302 gives the DHHS Secretary
discretionary authority to require
standard data collection around
demographic categories related to
health care disparities in addition to the
five already required categories (race,
ethnicity, sex, primary language, and
disability status).
Analysis and Reporting
 Requires that any federal reporting
requirements related to health care
quality be reported (to the extent
practicable) by race, ethnicity, sex,
primary language, and disability status.
Analysis and Reporting
 Calls for the incorporation of demographic
data collection standards into national health
IT efforts
 Requires all federal programs that collect
demographic data related to health disparities
to use the data to detect health disparities,
monitor for trends, and to widely report results
 Calls for the DHHS Secretary to make data
available for research, additional analysis, and
dissemination
 Requires use of privacy protections and data
security standards
Funding
 Part (a) concludes with two statements
related to funding:
– Authorizes ‘such funds as necessary’ for
2010-2014 to conduct these activities
 Does not include a specific appropriation
– Concludes with a statement that no data
collection activities as described under this
Section may be conducted “unless funds
are directly appropriated for such purpose
in an appropriations Act.”
Implementing Section 4302
 Establishing data standards
 Considering additional categories
 Special surveys related to the care of
people with disabilities
 Preparing to incorporate standards
 Data analysis and reporting
Seeking Guidance and
Clarification
 “To the extent practicable”
 Application to the direct provision of
health care services
 What is considered a direct
appropriation in relation to the provision
that no data collection may take place
‘unless funds are directly appropriated’
Seeking Guidance and
Clarification
 “To the extent practicable”
 Application to the direct provision of
health care services
 What is considered a direct
appropriation in relation to the provision
that no data collection may take place
‘unless funds are directly appropriated’
 On going
Transparency and
Public Engagement
 DHHS is committed to making
Affordable Care Act implementation a
transparent process and seeking public
input throughout the process.
Initial Data Standards
 Long-standing and well-established
DHHS interagency Data Council has
taken the lead on drafting initial data
standards for race, ethnicity, sex,
primary language, and disability status
Initial Data Standards
 Long-standing and well-established DHHS
interagency Data Council has taken the lead
on drafting initial data standards for race,
ethnicity, sex, primary language, and disability
status
–
–
–
–
–
Guided by OMB standards for race and ethnicity
Consultations with OMB, Dept of Labor, Bureau of Census
and other federal partners
Informed by recent IOM reports on data granularity
Decision made to narrowly define sex so as not to include
sexual orientation
Primary focus is on self reported data collection standards
for surveys, but using the opportunity to explore data
collection standards for administrative data
Next Steps
 Data Council to complete draft standards
 Conduct DHHS and Secretarial review
 Solicit and incorporate public comment on
proposed draft standards
 Issue final five data collection standards
Additional Categories
 DHHS is hosting listening sessions to
elicit ideas for additional demographic
categories related to health disparities
– Desire for additional data must be
tempered by consideration that these
standards will apply to all federal health
data collection activities
 Consideration of public data collection burden
 Consideration of cost
Additional Categories
 DHHS is hosting listening sessions to
elicit ideas for additional demographic
categories related to health disparities
– Desire for additional data must be
tempered by consideration that these
standards will apply to all federal health
data collection activities
 Consideration of public data collection burden
 Consideration of cost
 More about this in a few moments…
Next Steps
 Incorporate public input
 Prepare DHHS recommendation to the
Secretary
 Secretary may choose not to create
additional categories at this time, may
call for standard development for one or
more additional categories, or may
request additional public input
New Surveys on Health Care
for People with Disabilities
 Small working group led by DHHS Office
on Disability leading this effort
 Without specific appropriation, this effort
may not progress quickly
Preparing for Use of Data
Standards
 Despite standards not being ready,
DHHS is conducting a review of the
major federal health care surveys and
considering how to incorporate inclusion
of all five data standards.
Data Analysis and Reporting
 Prior to the Affordable Care Act, DHHS
had a commitment to creating health
care equity. Many efforts were already
underway to improve data collection,
analysis, and reporting, and these
continue in parallel with implementation
of Section 4302.
Inviting Input on Additional
Demographic Categories
 In the near future, DHHS staff involved
in implementing Section 4302 will be
conducting listening sessions to gather
input on what, if any, additional
demographic categories related to
health disparities, the DHHS Secretary
should require be collected in all federal
data collection activities.
Specific 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?
Specific Questions (cont.)




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?
Responses
 Lead response from Dr. José Escarce
 Followed by questions and answers and
responses regarding additional
demographic categories
– Please remember, that at this time,
feedback must focus on additional
categories and not the five required
categories (race, ethnicity, sex, primary
language, and disability status)
Submitting Questions

Questions, both substantive & technical in nature, may be submitted at
any time during the presentation.

Click on “Ask a Question” below this presentation. Complete the form
and click “Submit.”

Responses will only be sent if related to a technical issue; otherwise
you will not receive a confirmation that your question has been
received.
Commentary
José J. Escarce, M.D.
Associate Director
Robert Wood Johnson Clinical Scholars
Program
UCLA School of Medicine/RAND
Comments on:
The Affordable Care Act:
Section 4302 and Implications
for Data Collection
José J. Escarce, M.D., Ph.D.
UCLA and RAND
AcademyHealth and Aetna Foundation
Disparities Research Webinar Series
November 18, 2010
Outline of comments
• Types of disparities
• Reasons for collecting data
• Scope of data collection
– Private health insurance
– Socioeconomic position
Types of disparities
• Health care disparities
– Social justice
– Effect on health status
Types of disparities
• Health care disparities
– Social justice
– Effect on health status
• Health disparities
– Role of health care
– Social determinants of health
Reasons for collecting data
• Identify and measure disparities
• Design and implement interventions to
address them
• Monitor progress in reducing disparities
and refine interventions
Scope of data collection
• Most Americans receive their health
insurance coverage through private
insurers
Scope of data collection
• Most Americans receive their health
insurance coverage through private
insurers
• Therefore, to describe and address health
care disparities, we must understand
patterns of care by race, ethnicity, and
other relevant characteristics among
persons with private coverage
Scope of data collection
• Who could collect these data?
– Health plans
– Health care providers
– Purchasers
• Challenges to data collection
– Member concerns and perceptions
– Inadequate information systems
– Resource limitations
• NCQA Multicultural Health Care standards
Scope of data collection
• Socioeconomic position affects the health
care that Americans receive
Scope of data collection
• Socioeconomic position affects the health
care that Americans receive
• Socioeconomic position also has a
profound effect on the health of Americans
through a variety of mechanisms
Scope of data collection
• Socioeconomic position affects the health
care that Americans receive
• Socioeconomic position also has a
profound effect on the health of Americans
through a variety of mechanisms
• Therefore, to describe and address health
and health care disparities, ideally we
would understand patterns of care and
health status by SEP
Summary of research on SEP and health
• Gradient between SEP and mortality is
continuous – there is no threshold
• Gradient is seen with multiple indicators of
SEP
• In most studies using U. S. data, income
and education exert independent effects
• Mortality has declined over time, but the
gradient has persisted
Explaining the effects of SEP on health
Materialistic
Behavioral
Type of Explanation
Source of Inequality
Life span
Health care
Housing quality,
sanitation, transportation,
occupational hazards,
environmental hazards,
neighborhood quality,
nutrition
Ability to buy insurance,
medical care, medications
Diet, smoking, exercise,
leisure activities, alcohol
and substance abuse, risk
taking
Medical information,
awareness of health
problems, navigating the
system, self-management,
adherence
Feinstein JS. Milbank Q 1993; 71(2):279-322.
Medical care spending for U.S. adults,
by family income
Medical care spending (jn $)
3,500
3,000
2,500
2,000
1,500
1,000
500
0
<1.0
1.0-1.99
2.00-2.99 3.00-3.99 4.00-4.99
Income, multiple of poverty level
Unadjusted
>5.0
Medical care spending for U.S. adults,
by family income
Medical care spending (in $)
3,500
3,000
2,500
2,000
1,500
1,000
500
0
<1.0
1.0-1.99
2.00-2.99 3.00-3.99 4.00-4.99
Income, multiple of poverty level
Unadjusted
Adjusted
>5.0
Conclusions
• Identifying and addressing health and
health care disparities requires collecting
relevant data on relevant populations
• Efforts to collect data on persons with
private health insurance coverage should
be encouraged and expanded
• Ideally, data collection would include
measures of socioeconomic position
Discussion
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