April 4, 2012
Indiana Joint National Public Health Week Conference
What is standardized REL data?
 Specific method of collecting, recording and reporting REL data that is the
same across all areas (uniform questions and categories)
 REL data is reported by the individuals served (“self-reported”) or their
families and/or caregivers
 Standardized method collects, records, stores and reports REL data that is
accurate, comparable, and consistent (electronic vs. manual)
 Develop strategy to prepare, implement, monitor and sustain adherence to
standardization guidelines
What is the rationale?
 To make certain all individuals served receive high-quality care
 To identify and reduce disparities
 To provide culturally and linguistically appropriate services and
materials
 To ensure equitable access to health care
 To develop quality improvement programs
 To comply with regulations
National Movement for REL Data Collection
 American Recovery and Reinvestment Act (ARRA) 2009 requires hospitals and
providers to collect REL data as part of the eligibility for meaningful use
payments
 Patient Protection and Affordable Care Act of 2010 requires health care
programs that receive federal funds to collect REL data
 Title VI of the Civil Rights Act of 1964 requires agencies that receive federal
funds must provide interpretation to individuals with Limited English
Proficiency
 Joint Commission requires hospitals to collect race, ethnicity, and preferences
for spoken language and written information
 U.S Department of Health and Human Services, Office of Minority Health,
National Partnership for Action to End Health Disparities

Goal #5 Research and Evaluation – improve coordination and utilization of research
and evaluation outcomes
REL Workgroup
• Purpose
• Explore current methods of race ethnicity data
collection and make recommendations to state and local
agencies about the collection of race ethnicity data
• Goal
• Standardize collection and reporting of race ethnicity
data across the state
Literature Review
 Race and ethnicity are not genetic but rather social constructs that
evolve over time
 Broad racial groups do not adequately describe diversity of population
 Collection of socio-economic information is important
 Evidence supports inclusion of Hispanic Latino category within the
race question
 Race ethnicity data collection is dynamic
Community Input
 Obtain feedback from the community through focus
groups
 REL workgroup developed focus group script to
understand what people think about race, ethnicity and
language questions asked in a hospital or clinic
Focus Groups
 Twelve focus groups conducted with 124 participants
 Selected counties in Central, Northern and Southern regions of
Indiana
 Languages
 English and Spanish
 Participant demographics
 Age
 Gender
 Race/Ethnicity
 Educational attainment
Focus Group Demographics
Focus Group Participants by Age Group
16.7
6.9
18-24
15.7
25-34
35-44
11.8
45-54
55-64
65+
17.6
31.4
Focus Group Demographics
Focus Group Participants by Gender
35.3
Female
Male
64.7
Focus Groups Demographics
Focus Group Participants by Race/Ethnicity
Black, NonHispanic
29.1
American Indian,
Non-Hispanic
Asian/Pacific
Islander, NonHispanic
46.6
4.9
12.6
6.8
White, NonHispanic
Hispanic
Focus Groups Demographics
Focus Group Participants by Educational Attainment
Elementary school
12.6
Some high school
35.0
19.4
15.5
17.5
High School
Graduate/GED
Some college or
technical school (13years)
College graduate (4
or more years)
Highlights

When asked about the benefits of collecting REL information:
 Many participants indicated REL data in health care will help to provide culturally competent
care
 Majority of participants reported it is important to ask REL questions in hospital or clinic to
make certain that appropriate care and services are provided
 Many participants would like to report this information on paper rather than verbally

When asked getting reassurance that the REL information will not affect health care
 Majority racial/ethnic minority participants indicated that it is very to extremely important that
they receive reassurance that REL data will not affect health care

When asked about collecting race and ethnicity information:
 Some participants expressed concern, suspicion and lack of trust about the collection of
race/ethnicity data reporting that this information would negatively impact on care

When asked about collecting language information:
 Majority of participants were not concerned about the collection of data on language
REL data collection projects
 National:
 Aligning Forces for Quality and Hospital Quality Network projects
funded by the Robert Wood Johnson Foundation
 Health and Human Services, Office of Minority Health REL
project
 State
 Indiana Hospital Association planning to roll-out REL project
statewide
 Regional
 Central Indiana Alliance for Health project funded by the Robert
Wood Johnson Foundation
Next Steps
 Disseminate
 Engage
 Recommend
 Adapt
 Restructure
 Implement
Questions
Thank you
Thank You
Adrienne Durham, MPH
Health Disparities Epidemiologist
Indiana State Department of Health
Epidemiology Resource Center
2 North Meridian Street
Indianapolis, IN 46204
317.233.7895 Fax 317.233.7805
adurham@isdh.IN.gov
Chandana Saha, PhD, MPH
Research Associate
Indiana Minority Health Coalition
3737 North Meridian Street, Suite 300
Indianapolis, IN 46208
317.920.4011 Fax 317. 926.4012
c.saha@imhc.org