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Collecting and Reporting Patient Demographic Data
FACILITATORS:Joanna Kaufman, RN, MSInstitute for Patient and Family Centered Care
Deidre Washington, PhDEmeobong Martin, MPHCenter on Health Disparities at Adventist HealthCare
Frederick Memorial Hospital
Frederick, Maryland
July 26, 2013
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Outline of the Program
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
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Partnerships
• 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
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Introductions
Name Title Hospital/Facility
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Training Objectives
1. Why disparities and data are important What health disparities are and their impact on
patients How hospital and health center data on race,
ethnicity, and language are used
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Training Objectives
2. How to collect race, ethnicity, and language data
Which data collection categories to use Why the data collection technique matters How to ask so patients are comfortable
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Training Objectives
3. How to address concerns How to address patient discomfort about providing
the data How to respond to concerns and
questions that patients may ask
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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.
Why collect race, ethnicity, and language data?
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VIDEO: Where are you from?
http://www.youtube.com/watch?v=DWynJkN5HbQ
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Core Concepts of Patient- and Family-Centered Care
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.
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Core Concepts of Patient- and Family-Centered Care
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.
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Core Concepts of Patient- and Family-Centered Care
Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
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Core Concepts of Patient- and Family-Centered Care
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.
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PATIENT PERSPECTIVES
Kermitt Wright, Patient and Family Advisor, Anne Arundel Medical Center
Maureen Theriault, Patient and Family Advisor, Meritus Hospital (Hagerstown, MD)
Facilitator: Joanna Kaufman, Program/Information Specialist, Institute for Patient and Family Centered Care
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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
1. Admission 2. Assessment
3. Treatment 4. End-of-Life Care
5. Discharge &Transfer 6. Organization Readiness
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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.
1. Admission
2. Assessment
3. Treatment
4. End-of-Life Care
5. Discharge &Transfer
6. Organization Readiness17
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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.
1. Admission
2. Assessment
3. Treatment
4. End-of-Life Care
5. Discharge &Transfer
6. Organization Readiness
Organization Readiness
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Changing Demographics in Maryland: Census 2010 Data
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Maryland is One of the MostRacial/Ethnic Diverse States
45% minority
4 jurisdictions > 50% minority
6 jurisdictions>40% minority
9 jurisdictions>33% minority
out of 24jurisdictions
DHMH, Office of Minority Health and Health Disparities20
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Allegany, Garrett, Montgomery & Washington Counties’ Population Statistics: Race, Ethnicity, Language, & Foreign Born Status
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%
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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%
Howard, Frederick, Baltimore Counties’ & Baltimore City Population Statistics: Race, Ethnicity, Language, & Foreign Born Status
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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% ------ 30.3% 12.9%
Asian 76.7% 78.5% ------ ------ 82.4% 71.9%
Hispanic/ Latino
74.7% 74.3% 57.0% ------ 88.3% 60.5%
A majority of Latino and Asian American residents in Maryland speak a language other than English at home. 23
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Percent of County Residents Speaking Non-English Languages By Race/Ethnicity
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. 24
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Why are we concerned?
Disparities exist in health and healthcare
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“Racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities, even when access related factors, such as patients insurance status and income, are controlled.”
Institute of Medicine (2003). Unequal Treatment
Health and Healthcare Disparities
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What causes health disparities?
• 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 communication27
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All Racial/Ethnic Groups Have Some Disparity
DHMH, Office of Minority Health and Health Disparities. www.dhmh.maryland.gov/mhqcc/Documents/Health-Disparities-Workgroup-Report-1-12-2012.pdf28
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Overall Patient Quality Indicator (PQI) Rates by Race/Ethnicity, Maryland, 2012
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Chronic Patient Quality Indicator (PQI) Rates by Race/Ethnicity, Maryland, 2012
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Acute Patient Quality Indicator (PQI) Rates by Race/Ethnicity, Maryland, 2012
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Diabetes Short Term Complication Rates by Race/Ethnicity, Maryland, 2012
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Diabetes Long Term Complication Rates by Race/Ethnicity, Maryland, 2012
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Hypertension Rates by Race/Ethnicity, Maryland, 2012
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Congestive Heart Failure by Race/Ethnicity, Maryland, 2012
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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
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.
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Additional studies (1 hospital each) show no racial/ethnic disparities in analgesia for long bone fracture– New York– San Francisco
Pain medication offered in the emergency department for long bone fractures
Bijur et al., Am J Emerg Med 2008; Fuentes et al., Acad Emerg Med, 200238
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Which study is right?
Nationally, inequalities exist in some hospitals and not in others.– Some hospitals have a “within-hospital” problem
AND Research shows that minority patients tend to
receive care in poorer quality hospitals– 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
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Which study describes your hospital?
You don’t know until you examine your data
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Disparities measurement lags behind quality measurement
Not all organizations collect race/ethnicity data– 78.4% collect race data– 50.5% collect ethnicity data– 50.2% collect language data
Half of hospitals “eyeball” their patients– Race/ethnicity assigned based on appearance or last
name
Regenstein and Sickler, 200641
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Disparities measurement lags behind quality measurement
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, 200642
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Why Should We Care About the Details?
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Cesarean section deliveries among mothers by race, MA, 2000-2004
Center for Health Information and Statistics, MDPH
*Non-Hispanic4444
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Cesarean section deliveries among mothers by specific racial/ethnic group
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Why is more detail better?
There is variation within ethnic groups Some terms don’t describe a whole
population very well– Asian vs. Korean, Vietnamese, East Indian
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Maryland Hospital Association
Nicole StallingsAssistant Vice President, Quality Policy & Advocacy
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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
• 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 programs53
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10 MINUTE BREAK
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Collecting the Data
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Why the data collection technique matters
Accurate data collection– Hospitals and policymakers understand what is really
happening in local area
Reflect how patients describe themselves Prevent patients’ concerns about being asked
about potentially sensitive information– Why you are asking them these questions– How the information will be used
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ALL patients should be asked about their race/ethnicity, and language
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
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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
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 adolescents63
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HSCRCRevisions to Race Categories
Old Race Categories White African American Asian or Pacific
Islander American
Indian/Eskimo/Aleut Biracial Other Unknown
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
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HSCRCOther Fields/Categories
Country of Origin/Birth List of 262 Country
Names Patient-Identified Other Declined to Answer Unknown
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
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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?
Recent study at Northwestern Memorial Hospital– 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.
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Testing introductions
Quality monitoringGovernment recommendationNeeds assessmentPersonal gain
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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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Testing introductions
Of the participants who were not completely comfortable reporting their race and ethnicity
– 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
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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
•Unavailable73© 2009 by the Health Research and Educational Trust
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Race Question
Which category best describes your race? 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
74© 2009 by the Health Research and Educational Trust
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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: ________.”
75© 2009 by the Health Research and Educational Trust
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How to address patients’ concerns
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Most patients agree it is important to collect race/ethnicity data
“It is important for hospitals and clinics to collect information from patients about their race or ethnic background”– Strongly agree 43%– Somewhat agree 37%– Unsure 6%– Somewhat disagree 10%– Strongly disagree 4%
Study conducted at Northwestern Memorial Hospital Data shown in HRET tool kit. Baker et al. 2005, JGIM
80%
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Patients strongly support hospitals examining differences in quality
“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”– Strongly agree 93%– Somewhat agree 4%– Unsure 2%– Somewhat disagree 1%– Strongly disagree 0%
Study conducted at Northwestern Memorial Hospital Data shown in HRET tool kit. Baker et al. 2005, JGIM
97%
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But patients have concerns about how the data are used
“How concerned would you be that this data could be used to discriminate against patients”– Very concerned 31%– Somewhat concerned 20% – A little concerned 15%– Not concerned at all 34%
Study conducted at Northwestern Memorial Hospital Data shown in HRET tool kit. Baker et al. 2005, JGIM
51%
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Patients’ Concerns
Concerns about why the information is needed
Concerns about privacy and how the data will be used
Concerns about how to answer the questions
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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 – Or present options on a card
Train staff to introduce, collect, and record the data so the process is smooth and effective
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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:
– 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
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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
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?
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What not to say
“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?
– Northwestern Memorial Hospital study discussed earlier– These statements do not make patients more comfortable
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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
Key Points
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Data Collection and Training StaffRole Plays
We will now have the opportunity to practice patient data collection, and training hospital staff, via two different sets of role plays.
– 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.
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Data collection role plays
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Sources
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/Staf-4190.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
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Questions
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Learn more on the web: www.adventisthealthcare.com/disparities
Visit us on Facebook:http://www.facebook.com/HealthDisparities
Look for us in your inbox: Monthly CHD e-newsletter
About the Center on Health Disparities
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