Transcript Race, Ethnicity, and Language Data Collection

Collecting and Reporting
Patient Demographic Data
FACILITATORS:
Joanna Kaufman, RN, MS
Institute for Patient and Family
Centered Care
Deidre Washington, PhD
Emeobong Martin, MPH
Center on Health Disparities at
Adventist HealthCare
Frederick Memorial Hospital
Frederick, Maryland
July 26, 2013
Outline of the Program
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Registration & Knowledge Pre-Assessment
Welcome and Introductions
Training Objectives
Patient Perspectives on Data Collection
Demographic Data Collection Training
Practice and Role-Plays
Discussion
Knowledge Post-Assessment & Evaluation
Closing
Partnerships
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Developed by the Center on Health Disparities
of Adventist HealthCare and the Institute for
Patient- and Family-Centered Care
Sponsored by the Maryland Health Services
Cost Review Commission
Supported by Maryland Hospital Association
Introductions
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Name
Title
Hospital/Facility
Training Objectives
1. Why disparities and data are important
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What health disparities are and their impact on
patients
How hospital and health center data on race,
ethnicity, and language are used
Training Objectives
2. How to collect race, ethnicity, and
language data
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Which data collection categories to use
Why the data collection technique matters
How to ask so patients are comfortable
Training Objectives
3. How to address concerns
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How to address patient discomfort about providing
the data
How to respond to concerns and
questions that patients may ask
Why collect race, ethnicity, and
language data?
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To monitor quality of care.
To design innovative programs to
eliminate disparities.
To know our patients, so we can
better meet their needs and show
the community that we deliver the
best care possible to them.
To provide care and services that
are easily accessible,
personalized, high quality, and
affordable.
VIDEO: Where are you from?
http://www.youtube.com/watch?v=DWynJkN5HbQ
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Core Concepts of Patient- and
Family-Centered Care
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Respect and dignity. Health care
practitioners listen to and honor patient and
family perspectives and choices. Patient and
family knowledge, values, beliefs and cultural
backgrounds are incorporated into the
planning and delivery of care.
Core Concepts of Patient- and
Family-Centered Care
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Information Sharing. Health care
practitioners communicate and share
complete and unbiased information with
patients and families in ways that are
affirming and useful. Patients and families
receive timely, complete, and accurate
information in order to effectively participate
in care and decision-making.
Core Concepts of Patient- and
Family-Centered Care
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Participation. Patients and families are
encouraged and supported in participating in
care and decision-making at the level they
choose.
Core Concepts of Patient- and
Family-Centered Care
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Collaboration. Patients and families are also
included on an institution-wide basis. Health
care leaders collaborate with patients and
families in policy and program development,
implementation, and evaluation; in health
care facility design; and in professional
education, as well as in the delivery of care.
PATIENT PERSPECTIVES
Kermitt Wright, Patient and Family Advisor,
Anne Arundel Medical Center
Maureen Theriault, Patient and Family Advisor,
Meritus Hospital (Hagerstown, MD)
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Facilitator: Joanna Kaufman, Program/Information
Specialist, Institute for Patient and Family Centered
Care
Hospital Accreditation Standards
The Joint Commission’s patient-centered
communication standards require
documentation of patient information,
particularly a patient’s communication needs
such as preferred language for discussing
healthcare, as well as other important patient
information (2011).
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Care Continuum Components
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1. Admission
2. Assessment
3. Treatment
4. End-of-Life Care
5. Discharge &Transfer
6. Organization Readiness
Organization Readiness
1. Admission
2. Assessment
3. Treatment
4. End-of-Life Care
5. Discharge &Transfer
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6. Organization Readiness
Data Collection and Use
 Develop a system to collect patient-level
race and ethnicity information.
 Develop a system to collect patient
language information.
 Make sure the hospital has a process to
collect additional patient-level information.
Organization Readiness
1. Admission
2. Assessment
3. Treatment
4. End-of-Life Care
5. Discharge &Transfer
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6. Organization Readiness
Patient, Family, and Community
Engagement
 Collect feedback from patients, families,
and the surrounding community.
 Share information with the community
about the hospital’s efforts to meet
unique patient needs.
Changing Demographics in
Maryland: Census 2010 Data
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Maryland is One of the Most
Racial/Ethnic Diverse States
45% minority
4 jurisdictions
> 50% minority
6 jurisdictions
>40% minority
9 jurisdictions
>33% minority
out of 24
jurisdictions
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DHMH, Office of Minority
Health and Health
Disparities
Allegany, Garrett, Montgomery & Washington Counties’
Population Statistics: Race, Ethnicity, Language, & Foreign
Born Status
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Census 2010
population
statistics
U.S.
MD
Allegany
County
Garrett
County
Montgomery
County
Washington
County
White
78.1%
61.1%
89.1%
97.7%
49.3%
85.2%
Black or
African
American
13.1%
30.0%
8.2%
1.1%
16.6%
10.4%
Asian
5.0%
5.8%
0.8%
0.4%
13.9%
1.6%
Hispanic or
Latino
16.7%
8.4%
1.6%
0.8%
17.0%
8.7%
Foreign
Born
12.8%
13.5%
1.8%
0.9%
31.4%
4.5%
Language
other than
English
20.3%
16.2%
4.1%
4.0%
38.1%
6.7%
Howard, Frederick, Baltimore Counties’ & Baltimore City
Population Statistics: Race, Ethnicity, Language, &
Foreign Born Status
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Census 2010
population
statistics
United
States
Maryland
Howard
County
Frederick
County
Baltimore
County
Baltimore
City
White
78.1%
61.1%
62.3%
83.7%
65.4%
29.6%
Black or African
American
13.1%
30.0%
18.1%
9.1%
26.8%
63.7%
Asian
5.0%
5.8%
15.7%
4.2%
5.2%
2.3%
Hispanic or
Latino
16.7%
8.4%
6.2%
7.8%
4.4%
4.2%
Foreign Born
12.8%
13.5%
17.6%
9.2%
10.7%
7.2%
Language other
than English
spoken at home
20.3%
16.2%
21.9%
11.9%
12.6%
8.9%
Percent of County Residents Speaking
Non-English Languages by Race/Ethnicity
Census
2010
population
statistics
United
States
Maryland
Allegany
County
Garrett
County
Montgomery
County
Washington
County
White
15.2%
10.2%
2.3%
4.0%
22.2%
4.1%
Black or
African
American
8.3%
9.8%
10.3%
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30.3%
12.9%
Asian
76.7%
78.5%
------
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82.4%
71.9%
Hispanic/
Latino
74.7%
74.3%
57.0%
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88.3%
60.5%
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A majority of Latino and Asian American residents in Maryland
speak a language other than English at home.
Percent of County Residents Speaking NonEnglish Languages By Race/Ethnicity
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Census 2010
population
statistics
United
States
Maryland
Howard
County
Frederick
County
Baltimore
County
Baltimore
City
White
15.2%
10.2%
9.8%
6.7%
7.9%
11.8%
Black or
African
American
8.3%
9.8%
12.5%
10.3%
7.8%
4.0%
Asian
76.7%
78.5%
84.2%
78.7%
81.0%
74.4%
Hispanic/
Latino
74.7%
74.3%
72.8%
71.6%
66.1%
72.2%
A majority of Latino and Asian American residents in
Maryland speak a language other than English at home.
Why are we concerned?
Disparities exist in health and
healthcare
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Health and Healthcare Disparities
“Racial and ethnic minorities tend to receive
a lower quality of healthcare than nonminorities, even when access related
factors, such as patients insurance status
and income, are controlled.”
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Institute of Medicine (2003). Unequal Treatment
What causes health disparities?
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• Social, economic, and environmental factors
– Lower income groups
– Environment - Lead paint, air quality
• Barriers to getting health care
– Health insurance
– Transportation
– Language
• Differences in quality of health care
– Different treatments
– Discrimination
– Doctor-patient communication
All Racial/Ethnic Groups Have
Some Disparity
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DHMH, Office of Minority Health and Health Disparities.
www.dhmh.maryland.gov/mhqcc/Documents/Health-Disparities-Workgroup-Report-1-12-2012.pdf
Overall Patient Quality Indicator (PQI) Rates
by Race/Ethnicity, Maryland, 2012
1,600.00
1,522.82
Rater per 100,000 People
1,400.00
1,200.00
1,212.23
1,000.00
800.00
765.89
713.56
600.00
400.00
200.00
148.34
169.84
White, NonHispanic
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Black, NonHispanic
Hispanic
Asian and NH/PI, American Indian /
Non-Hispanic
AN , Non-Hispanic
Race / Ethnicity Category
Other, NonHispanic
Chronic Patient Quality Indicator (PQI)
Rates by Race/Ethnicity, Maryland, 2012
1,200.00
1,105.39
Rates per 100,000 People
1,000.00
800.00
700.92
600.00
515.11
422.39
400.00
200.00
88.63
96.85
White, NonHispanic
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Black, NonHispanic
Hispanic
Asian and NH/PI, American Indian /
Non-Hispanic AN , Non-Hispanic
Race / Ethnicity Category
Other, NonHispanic
Acute Patient Quality Indicator (PQI) Rates by
Race/Ethnicity, Maryland, 2012
600
Rates per 100,000 People
500
511.34
417.55
400
291.17
300
250.78
200
100
59.71
73
0
White, NonHispanic
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Black, NonHispanic
Hispanic
Asian and NH/PI, American Indian
Non-Hispanic
/ AN , NonHispanic
Race / Ethnicity Category
Other, NonHispanic
Diabetes Short Term Complication Rates by
Race/Ethnicity, Maryland, 2012
120.00
Rates per 100,000 people
100.00
98.04
80.00
60.00
40.00
40.00
36.49
20.00
13.56
8.69
1.72
White, NonHispanic
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Black, NonHispanic
Hispanic
Asian and NH/PI, American Indian /
Non-Hispanic
AN , Non-Hispanic
Race / Ethnicity Category
Other, NonHispanic
Diabetes Long Term Complication Rates by
Race/Ethnicity, Maryland, 2012
180
164.34
160
Rates per 100,000 People
140
120
108.45
100
80
80.13
56.68
60
40
20.22
20
17.82
0
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White, NonHispanic
Black, NonHispanic
Hispanic
Asian and NH/PI, American Indian /
Non-Hispanic
AN , Non-Hispanic
Race / Ethnicity Category
Other, NonHispanic
Hypertension Rates by Race/Ethnicity,
Maryland, 2012
120
103.12
Rates per 100,000 People
100
80
60
47.44
40
35.72
32.94
20
6.8
7.76
Hispanic
Asian and NH/PI,
Non-Hispanic
0
White, Non-Hispanic Black, Non-Hispanic
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Race / Ethnicity Category
American Indian / Other, Non-Hispanic
AN , Non-Hispanic
Congestive Heart Failure by Race/Ethnicity,
Maryland, 2012
400
369.25
Rates per 100,000 People
350
300
267.95
250
200
149.11
150
156.84
100
50
25.89
40.81
0
White, Non-Hispanic Black, Non-Hispanic
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Hispanic
Asian and NH/PI,
Non-Hispanic
Race / Ethnicity Category
American Indian / Other, Non-Hispanic
AN , Non-Hispanic
National studies show significant
racial/ethnic inequalities in access and
quality of care
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Pain medication offered in the emergency
department for long bone fractures
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Todd KH, JAMA 1993, 269:1537-9; Todd KH, Ann Emerg Med 2000, 35:11-16;
Ezenwa et al., J of Nursing Scholarship 2006, 38(3): 225-233.
Pain medication offered in the emergency
department for long bone fractures
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Additional studies (1 hospital each) show no
racial/ethnic disparities in analgesia for long
bone fracture
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New York
San Francisco
Bijur et al., Am J Emerg Med 2008; Fuentes et al., Acad Emerg Med, 2002
Which study is right?
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Nationally, inequalities exist in some hospitals
and not in others.
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AND
Research shows that minority patients tend to
receive care in poorer quality hospitals
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Some hospitals have a “within-hospital” problem
We have a “between-hospital” problem
Hasnain-Wynia et al., Arch Intern Med, 2007; Jha et al., Health Aff, 2008, Jha et al., Arch Intern Med, 2007
Which study describes
your hospital?
You don’t know until you
examine your data
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Disparities measurement lags behind
quality measurement
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Not all organizations collect race/ethnicity data
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Half of hospitals “eyeball” their patients
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78.4% collect race data
50.5% collect ethnicity data
50.2% collect language data
Race/ethnicity assigned based on appearance or last
name
Regenstein and Sickler, 2006
Disparities measurement lags behind
quality measurement
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When they collect it, they don’t always use it
Quality of care
13.5%
Utilization of health services
17.5%
Health outcomes
14.6%
Satisfaction with hospital services
15.5%
Regenstein and Sickler, 2006
Why Should We Care About the
Details?
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Cesarean section deliveries among
mothers by race, MA, 2000-2004
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*Non-Hispanic
Center for Health Information and Statistics, MDPH
Cesarean section deliveries among
mothers by specific racial/ethnic group
10%
15%
20%
25%
30%
35%
40%
45%
Brazilian 40%
African 37%
Haitian 35%
Asian Indian 34%
W. Indian/Carib. 32%
European 32%
Dominican 31%
All Other 31%
Oth Port 31%
African Amer 30%
Native Amer 28%
Vietnamese 28%
Other Asian 27%
Middle Eastern 27%
Oth Hispanic 27%
Chinese 26%
Puerto Rican 26%
Oth Central Amer 25%
Cape Verdean 25%
Salvadoran 22%
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Cambodian 15%
Why is more detail better?
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There is variation within ethnic groups
Some terms don’t describe a whole
population very well
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Asian vs. Korean, Vietnamese, East Indian
Maryland Hospital Association
Nicole Stallings
Assistant Vice President, Quality Policy & Advocacy
Encourage Reporting and Analysis of
Health Disparities Data (cont.)
• MHCC and HSCRC required to study the
feasibility of including racial and ethnic
performance data tracking in quality incentive
programs.
– Report to the General Assembly on or before
January 1, 2013, data by race and ethnicity in
quality incentive programs where feasible.
– Submit a report on or before January 1, 2013, to
the Governor and the General Assembly that
explains when data cannot be reported by race and
ethnicity and describes necessary changes to
overcome those limitations.
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Inpatient Race and Ethnicity Data
Analysis
• Percentage of racial and ethnic
minorities have grown over the
years
• Percentage of biracial category
is small but increasing
• Race information from the
Spanish/Hispanic ethnicity is
mostly recorded as “Other”
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Race & Ethnicity Data Quality
• It’s difficult to understand missing categories
(no patients with specific race/ethnicity or
information is not collected)
• Variation in the percentage of unknown and
other race categories among hospitals
• Collection of biracial information
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Data Collection Survey: Overview of
Instrument and Process
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All 46 Maryland Acute Care Hospitals were surveyed in early July
37 hospitals responded to the survey representing 81% of all
discharges for inpatient care and 85% of all revenue for outpatient
care from June 2011 to May 2012
Survey sent to Case Mix Liaison staff and CFOs with instructions to
gather input from Registration/Access staff.
Survey instrument was developed internally based on discussion at
June 6, 2012 Disparities Work Group Discussion and included
queries on:
– Respondents’ demographic information
– Ethnicity data collected
– Race data collected
– Staff data collection practices, training content and timing/interval
– Data collection tools and resources used
– Areas where hospitals would benefit from best practice
training and support
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General Observations Regarding Survey
Information Gathered
• Variation in data collection categories for patients with more than
one race
• Training content varied by hospital
• All but one hospital indicated they use verbal or written self-report
for data collection
• Variation in timing of staff training but 95% indicated in occurred
an initial orientation (versus, annually, as-needed basis, periodic
with audit)
• Most hospitals use internally developed programs for staff data
collection
• About half of the hospitals indicated they would benefit from
additional training or support Resources
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HSCRC Actions
• Data Collection:
– Standardize collection of race and ethnicity information
and reporting
– Addition of more granular information (preferred
language, country of origin)
– Collecting detailed race categories for more than one
race category
– Training and education on best practices
• Next Steps: Reporting and Incentives
– Developing methodologies for meaningful information
and comparison
– Incorporating racial and ethnic disparities in quality
incentive programs
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10 MINUTE BREAK
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Collecting the Data
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Why the data collection technique
matters
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Accurate data collection
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Reflect how patients describe themselves
Prevent patients’ concerns about being asked
about potentially sensitive information
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Hospitals and policymakers understand what is really
happening in local area
Why you are asking them these questions
How the information will be used
ALL patients should be asked about
their race/ethnicity, and language
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Self-reporting is the most accurate source of
information
Self-reporting will increase consistent reporting
within a health care institution
Patients are more likely to select the same
categories to describe themselves over time
than staff who are assuming or guessing
Hi, my name is Monica Soni
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Hi, my name is Sarah Oo
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Hi, my name is Sarah Oo
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My name
is Anuj
Goel
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Daeven and
Riyan
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If the patient is a child
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Children and young adolescents
– Ask the parent
Older adolescents
– Ask the child
Child’s race/ethnicity may not be the same as the
parents
– If parents are 2 or more races or ethnicities
– If child is adopted
If the child speaks English and the parents don’t
– Use the language the parent speaks for younger
children
– Parent’s or child’s language for adolescents
HSCRC
Revisions to Race Categories
Old Race Categories
 White
 African American
 Asian or Pacific
Islander
 American
Indian/Eskimo/Aleut
 Biracial
 Other
 Unknown
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Revised Race Categories
 White
 Black or African American
 Asian
 Native Hawaiian or Other
Pacific Islander
 American Indian or Alaska
Native
 Other
 Unknown or Cannot be
Determined
 Declined to Answer
HSCRC
Other Fields/Categories
Country of Origin/Birth
 List of 262 Country
Names
 Patient-Identified
 Other
 Declined to Answer
 Unknown
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Preferred Spoken Language
• Option: List of languages
• Option: Open free-text field
(alphabetic characters)
Ethnicity
• Spanish/Hispanic Origin
• Not Spanish/Hispanic
Origin
• Declined to Answer
• Unknown
The importance of the introduction
Helps patients understand why you are
collecting the information and how it will
(and will not) be used
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Introduction
In order to guarantee that all patients
receive the highest quality of care and to
ensure the best services possible, we are
asking all patients about their race,
ethnicity, and language.
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Why use this introduction?
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Recent study at Northwestern Memorial
Hospital
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Tested 4 introductions
Asked patients’ how comfortable they were sharing
race and ethnicity information after reading them the
introductions
Baker et al. Journal of General
Internal Medicine. 2005.
Testing introductions
Quality monitoring
 Government recommendation
 Needs assessment
 Personal gain
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Testing introductions
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Quality monitoring
– We want to make sure that all our patients get the
best care possible, regardless of their race or ethnic
background. We would like you to tell us your race or
ethnic background so that we can review the
treatment that all patients receive and make sure
that everyone gets the highest quality of care.
Government recommendation
– Several government agencies recommend that we
collect information on the race and ethnic
backgrounds of our patients as part of a national
effort to make sure all patients have access to
quality health care. Please tell me your race or
ethnic background.
Testing introductions
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Needs assessment
– We take care of patients from many different
backgrounds. We would like you to tell us your
race or ethnic background so that we can
understand our patients better. This will help us
decide who to hire, how to train our staff better,
and what health information is most helpful for our
patients.
Personal gain
– We would like you to tell us your race or ethnic
background so that we can ensure that all of our
patients are treated equally. This will help us make
sure you get the best care possible.
Testing introductions
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Of the participants who were not
completely comfortable reporting their
race and ethnicity
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25.0% said that the quality statement made
them somewhat more comfortable
25.6% said the quality statement made them
much more comfortable
Far better than the results for the other
3 statements
Ethnicity Question
Now, I would like you to tell me your race and ethnic
background. We use this information to review the
treatment patients receive and make sure everyone gets the
highest quality of care.
First, do you consider yourself Hispanic/Latino?
•Yes
•No
•Declined
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•Unavailable
© 2009 by the Health Research and Educational Trust
Race Question
Which category best describes your race?
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American Indian or Alaska Native
Asian
Black or African American
Native Hawaiian or Other Pacific Islander
White
Other
Declined to Answer
Unknown or Cannot be Determined
© 2009 by the Health Research and Educational Trust
Preferred Language Question
What language do you feel most comfortable
speaking with your doctor or nurse?
Provide a list of locally relevant language
categories or use open field, “Other, please
specify: ________.”
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© 2009 by the Health Research and Educational Trust
How to address patients’ concerns
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Most patients agree it is important
to collect race/ethnicity data
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“It is important for hospitals and clinics to
collect information from patients about their
race or ethnic background”
–
–
–
–
–
77
Strongly agree
Somewhat agree
Unsure
Somewhat disagree
Strongly disagree
43%
37%
6%
10%
4%
Study conducted at Northwestern Memorial Hospital
Data shown in HRET tool kit. Baker et al. 2005, JGIM
80%
Patients strongly
support hospitals examining
differences in quality
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“It is important for hospitals and clinics to conduct
studies to make sure that all patients get the same
high-quality care regardless of their race or ethnic
background”
–
–
–
–
–
78
Strongly agree
Somewhat agree
Unsure
Somewhat disagree
Strongly disagree
93%
4%
2%
1%
0%
Study conducted at Northwestern Memorial Hospital
Data shown in HRET tool kit. Baker et al. 2005, JGIM
97%
But patients have concerns about how
the data are used
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“How concerned would you be that this data
could be used to discriminate against
patients”
–
–
–
–
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Very concerned
Somewhat concerned
A little concerned
Not concerned at all
31%
20%
15%
34%
Study conducted at Northwestern Memorial Hospital
Data shown in HRET tool kit. Baker et al. 2005, JGIM
51%
Patients’ Concerns
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Concerns about why the information is
needed
Concerns about privacy and how the data
will be used
Concerns about how to answer the questions
Addressing Patient Concerns
Patients will feel more comfortable if:
 They feel their privacy and patient rights are being respected
 Data collection does not take too much time and cause them to
be late for an appointment
So you can:
 Ensure data collection occurs in a space where patients can
speak privately
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Or present options on a card
Train staff to introduce, collect, and record the data so the
process is smooth and effective
Addressing Patient Concerns
Patients will feel more comfortable if they know:
 The questions come from a place of concern and that the data will
serve a positive and valuable purpose
 Their care will not be affected
 The data will only be reported in a group
 They do not feel forced to provide the information
So you can:
 Use the introduction to:
–
–
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Explain why data are being collected and how data will/will not be used
Make certain that staff are able to express the importance of the data in
ensuring all patients receive high quality and comprehensive care
Explain that patients are not required to answer the questions
Addressing Patient Concerns
Patients will feel more comfortable if they know:
 They have all of the information they need and their concerns
and questions are addressed
 They feel the questions provide them with choices that allow
them to describe their identity
So you can:
 Ask every patient about race/ethnicity in the same way
 Ensure that if patients have any questions, they are answered
and concerns addressed
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Challenging the need to answer
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84
I don’t want to answer.
It’s none of your business.
I’m human.
Why do you care? We’re all
human beings.
Can’t you tell what my race
or ethnicity is by looking at
me?
What not to say
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“I’m asking you these questions because the
government says I have to.”
“This will help us hire staff to better meet your needs.”
“This will help us make sure you get the best possible
care.”
Why not?
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–
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Northwestern Memorial Hospital study discussed earlier
These statements do not make patients more comfortable
Key Points
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Know the community your hospital serves
Use standard categories for race and
ethnicity
Collect complete and accurate data from
patients (they self-report)
High-Quality data  high-quality care
Use data to target interventions, reduce
disparities
Data Collection and Training Staff
Role Plays

We will now have the opportunity to practice patient
data collection, and training hospital staff, via two
different sets of role plays.
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The role plays are available as attachments on the HSCRC
website.
We will now conclude the recorded portion of today’s
training session, for those participating via webinar.
Thank you for attending.
Data collection role plays
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Sources
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Health Research and Education Trust. Improving Health Equity Through Data
Collection AND Use: A Guide for Hospital Leaders. March 2011.
HRET Disparities Toolkit. A Toolkit for Collecting Race, Ethnicity, and Primary
Language Information from Patients, 2010. http://www.hretdisparities.org/Staf4190.php
The Joint Commission. Advancing Effective Communication, Cultural
Competence, and Patient- and Family-Centered Care: A Roadmap for
Hospitals. 2010.
For additional tools and resources, please refer to www.hret.org
Questions
90
About the Center on
Health Disparities
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