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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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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About the Center on Health Disparities

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