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Workshops
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Workshop B-1: Obtaining race, ethnicity, and primary language information:
policies and practices, challenges and opportunities
Obtaining
race, ethnicity, and primary language information: policies and practices,
challenges and opportunities
Overview
A critical barrier in our pursuit to understand and eliminate disparities
and improve quality of care for vulnerable populations is the frequent
lack of even the most basic data on race, ethnicity, and primary language
of patients within health care organizations. The methods for collecting
these data are disparate and, for the most part, incompatible across organizations
and institutions in the health care sector. In order to improve quality
of care for vulnerable populations and reduce and eliminate disparities,
this information is critical.
Each panelist will discuss a specific area regarding the collection
of race, ethnicity and primary language data and highlight current challenges
and future opportunities in policies and practices.
The panelists will cover the following topic areas:
- An overview of federal policies and the National Healthcare Disparities
Report, (Karen Ho)
- A discussion of what federal and state laws require, allow, and prohibit
in terms of data collection and case examples from interviews in 20
of the 51 jurisdictions.(Mara Youdelman)
- Collection of patient race and ethnicity information in STATEWIDE
hospital administrative dataBASES and the work underway with the Healthcare
Cost and Utilization Project (HCUP). (Roxanne Andrews)
- Why Health Care Organizations Should Collect Race, Ethnicity, and
Primary Language Data From Patients: The Case for A Uniform Framework
for Data Collection (Romana Hasnain-Wynia).
- The patient perspective on collecting race, ethnicity, and language
information. Can we relieve patients’ concerns about reporting
this information to health care providers (David Baker)
Federal
Polices and the National Healthcare Disparities Report,
Karen Ho
Reducing racial and ethnic disparities in health care requires that
such disparities can be identified by data and tracked over time. The
National Healthcare Disparities Report (NHDR) is an annual report to Congress
on the status of disparities in America. In the report, we identify and
track disparities across a broad range of measures of health care quality
and access using dozens of national data sources.
In this presentation, we will briefly describe the goals and key findings
of the first NHDR. We will then discuss challenges faced in integrating
data on race and ethnicity from many different data sources. Last, we
will illustrate one of the key findings of the report, that gaps in data
on race and ethnicity often prevent a comprehensive assessment of disparities
in health care for many populations.
Karen Ho is a Research Analyst for Medstat, Inc. working as part
of the National Healthcare Disparities Report research team at the Agency
for Healthcare Research and Quality (AHRQ). She has been involved in the
production of the National Healthcare Disparities Report 2004 and is currently
working on a derivative product of the National Healthcare Quality Report
for state leaders that will serve as a resource to improve quality of
care. Prior to joining AHRQ, Karen was a Program Coordinator for NICOS
Chinese Health Coalition, a private non-profit organization serving the
needs of Asian and Pacific Islander community of San Francisco. She was
involved in several health access and health promotion programs that worked
with underserved youth and their families. Karen received her B.A. at
University of California, Berkeley and is completing a M.H.S. in Health
Policy at the Johns Hopkins School of Public Health.
Karen Ho
Research Analyst, Center for Quality Improvement and Patient Safety
Agency for Healthcare Research and Quality
540 Gaither Road
Rockville, MD, 20850
301-427-1329 (voice); 301-427-1341 (fax)
kho@ahrq.gov
What federal
and state laws require, allow, and prohibit in terms of data collection,
Mara Youdelman, J.D.
One of the obstacles to comprehensive race, ethnicity and primary language
data collection is the misperception that federal or state laws prohibit
the collection. Yet a comprehensive review of federal statutes, regulations
and policies reveals that this data collection is actually encouraged
by many federal health programs. Over 100 federal data collection instruments
request information on race and/or ethnicity of patients in a variety
of health care settings. In addition, state laws and policies generally
support data collection as well. The limitations are rare – only
four states prohibit the collection of race and ethnicity by health insurers,
and then only in very limited circumstances. No states prohibit this type
of data collection post-enrollment. The presentation will offer an overview
of federal law and policies as well as findings of a DHHS OMH -funded
project investigating the race, ethnicity and primary language data collection
policies and practices in the 50 states and the District of Columbia.
Mara Youdelman has worked at the National Health Law Program (NHeLP)
since August 2000 on issues including Medicaid, racial and ethnic disparities,
data collection, reproductive health and immigrants’ issues. Mara
is co-author of Racial, Ethnic and Primary Language Data Collection
in the Health Care System: An Assessment of Federal Policies and Practices.
She is also co-author of NHeLP’s Ensuring Linguistic Access in
Health Care Settings: Legal Rights and Responsibilities. Mara is currently
Project Director of the National Language Access Advocacy Project, funded
by the California Endowment, to increase awareness of language access
issues at the federal level. She is also Co-Director of a project of The
Commonwealth Fund to identify promising practices for providing language
services in small health care provider settings as well as state and local
benefit eligibility offices. Prior to joining NHeLP, Mara completed a
teaching fellowship at Georgetown University Law Center’s Federal
Legislation Clinic and two years litigating for the Administration for
Children’s Services in New York City on child abuse and neglect cases.
Mara earned her J.D. from Boston University School of Law and her LL.M.
in Advocacy from Georgetown University Law Center.
Mara K. Youdelman
Staff Attorney
National Health Law Program
1101 14th Street NW, Suite 405
Washington, DC 20005
youdelman@healthlaw.org
ph: (202) 289-7661
fax: (202) 289-7724
www.healthlaw.org
Improving
Collection of Patient Race and Ethnicity in the Healthcare Cost and Utilization
Project (HCUP) and Statewide Hospital Administrative Data,
Roxanne Andrews, Ph.D.
Hospital administrative data have been an important source of information
on racial and ethnic disparities. In over 40 states hospital discharge
data systems exists containing summaries of information on all hospital
stays in the state. Unfortunately, many of these statewide systems either
do not include patient race and ethnicity, or have large proportion of
hospitals that do not report race and ethnicity. The Healthcare Cost and
Utilization Project (HCUP) is a partnership between the Agency for Healthcare
Research and Quality (AHRQ) and over 35 statewide data organizations.
HCUP collects discharge abstracts on about 90% of hospitalizations in
the US and creates uniform research files. This presentation describes
the status of race/ethnicity reporting in HCUP and HCUP's efforts to work
with statewide data organizations-- state governments, hospital associations
and private organizations-- to improve the collection of race and ethnicity
data. HCUP is focusing its improvement activities on the areas the HCUP
Partner organizations indicated as the biggest challenges in improving
race and ethnicity reporting-- showing the value of collecting race and
ethnicity, implementing standard categories that also reflect local needs,
and promoting a standard process for requesting the information from patients.
Roxanne Andrews, Ph.D. is a Senior Health Services Researcher
with the Center for Delivery, Organization and Markets (CDOM) at the Agency
for Healthcare Research and Quality (AHRQ). She is a member of the team
overseeing the development of the Healthcare Cost and Utilization Project
(HCUP) databases and conducts research using HCUP. Dr. Andrews has used
administrative data for 20 years to study health care costs, utilization,
quality and access focusing on ethnic minorities, women, and low income
populations. She has used HCUP data to examine racial and socioeconomic
disparities in hospital treatment and oversees the development of HCUP
statistics for the National Healthcare Disparities Report. She was formerly
Deputy Director, California Office of Statewide Health Planning and Development,
where she directed research studies and the development of performance
reports on the quality of California hospitals.
Roxanne Andrews, Ph.D.
Senior Health Services Researcher
Center for Delivery, Organization and Markets
Agency for Healthcare Research and Quality
540 Gaither Road
Rockville, MD 20850
301-427-1403
301-427-1430 (fax)
randrews@ahrq.gov
Why Health
Care Organizations Should Collect Race, Ethnicity, and Primary Language
Data From Patients: The Case for A Uniform Framework for Data Collection,
Romana Hasnain-Wynia, Ph.D.
We have documented disparities in health care on a national scale but
in order to move beyond documentation to action, health care organizations
must build upon recognition of specific disparities that can be addressed
locally and in their own institutions. Only then can organizations target
initiatives that can improve the quality of care for all patients. However,
in order to accomplish this goal systematically, organizations need data.
Currently some hospitals, clinics, and health plans collect race, ethnicity,
and language data but the data collection systems are fragmented, incomparable
within and across organizations, inefficient, and the quality of the data
is questionable. Health care organizations have multiple incentives for
collecting data but there are numerous barriers that need to be overcome
to collect better data more effectively. The presentation will highlight
current practices, drivers of data collection, barriers and solutions,
and will present the case for a Uniform Framework for collecting race,
ethnicity, and primary language data from patients.
Romana Hasnain-Wynia, Ph.D. is the Senior Director of Research
and Evaluation for the Health Research and Educational Trust (HRET). She
is the Project Director of HRET’s initiative Eliminating Disparities
Through Community and Hospital Partnerships and serves as the Principal
Investigator of the projects, Developing a Uniform Framework for Collecting
Race, Ethnicity, and Primary Language Data in Hospitals and Linking
Race and Ethnicity Data with Inpatient Quality of Care Measures in Private
Hospitals, both funded by the Commonwealth Fund. Romana serves as
a Project Advisor and a member of the Technical Advisory Panel to the
Joint Commission on Accreditation of Healthcare Organization’s project,
Hospitals, Language and Culture: A Snapshot of the Nation, which
is funded by the California Endowment. She is also the Principal Investigator
for a project funded by the CDC, which examines current practices, and
policies regarding HIV screening, awareness and use of rapid HIV test
in hospital emergency departments
Romana Hasnain-Wynia, Ph.D.
Senior Director, Research and Evaluation
Health Research and Educational Trust/AHA
One North Franklin, 30th floor
Chicago, IL 60606
312-422-2643
312-422-4568 (fax)
rhasnain@aha.org
www.aha.org/hret
Patients’
Attitudes Toward Health Care Providers Collecting Information on Race
and Ethnicity,
David W. Baker MD, MPH
This session will present the findings of a study to examine patient’s
attitude about providing information on their race & ethnicity and
their reactions to statements designed to assuage concerns about providing
this information, and to determine whether patient’s preferred to
provide race and ethnicity information using their own terms or by choosing
from a list of categories. A total of 220 patients’ in the General
Internal Medicine Clinic of Northwestern Medical Faculty Foundation were
interviewed following their visits. Patient’s expressed high levels
of support for hospitals and clinics collecting information on race and
ethnicity, especially if this information was to be used to routinely
monitor quality of care to assess whether disparities exist. However,
patient’s expressed significant levels of concern that this information
could be used to discriminate against patients. Of the statements designed
to diminish patients’ concern about providing this information, the
statement explaining that this information would be used to monitor quality
of care was the most effective at increasing patients’ comfort level.
Nevertheless, significant concerns remained. Patient preferences for providing
race/ethnicity data using their own terms versus choosing from a list
of options varied widely. However, among individuals who identified more
than one race & ethnicity (i.e. multiracial individuals), almost two-thirds
preferred to describe themselves using their own terms. We used this information
to design a tool to collect race and ethnicity information using self-report
and allowing for multiple terms to be expressed. Preliminary data suggest
high levels of acceptability, low rates of missing data, and very brief
time for administration. This suggests it should be possible to routinely
collect race and ethnicity information from patients in a way that is
acceptable to them and requires only minimal time for completion. This
instrument will soon be routinely implemented as part of inpatient registration
at Northwestern Memorial Hospital in Chicago, Illinois.
David W. Baker, MD, MPH is Associate Professor of Medicine and
Chief of the Division of General Internal Medicine at the Feinberg School
of Medicine, Northwestern University. His research has focused on access
to health care, racial and ethnic disparities in care, health literacy
and language as barriers to care, and quality of care for chronic diseases.
He was Principal Investigator for the Literacy in Health Care Study, the
first study of the prevalence of inadequate health literacy, and Principal
Investigator for the Prudential Health Literacy Study, the largest study
ever conducted of the relationship between literacy, health status, and
use of health care services. He is currently Principal Investigator for
a study to determine whether publicly reporting hospital mortality rates
led to improvements in outcomes, funded by the Agency for Healthcare Research
and Quality. He is also the Co-Principal Investigator of the Commonwealth
Fund Study, Linking Race and Ethnicity Data with Inpatient Quality of
Care Measures in Private Hospitals.
David W. Baker, MD, MPH, FACP
Chief, Division of General Internal Medicine
Feinberg School of Medicine of Northwestern University
676 N St. Clair St
Suite 200
Chicago, IL 60611
312-695-0917
312-695-0951 (fax)
dwbaker@northwestern.edu
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