Collecting and Reporting Patient Demographic Data FACILITATORS Joanna

Collecting and Reporting Patient Demographic Data FACILITATORS: Joanna Kaufman, RN, MS Institute for Patient and Family Centered Care Deidre Washington, Ph. D Emeobong Martin, MPH Center on Health Disparities at Adventist Health. Care Frederick Memorial Hospital Frederick, Maryland July 26, 2013

Outline of the Program l l l l l 2 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 • • • 3 Developed by the Center on Health Disparities o Adventist Health. Care and the Institute for Patien - and Family-Centered Care Sponsored by the Maryland Health Services Cost Review Commission Supported by Maryland Hospital Association

Introductions l l l 4 Name Title Hospital/Facility

Training Objectives 1. Why disparities and data are important l l 5 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 l l l 6 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 l l 7 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? l l 8 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=DWyn. Jk. N 5 Hb. Q 9

Core Concepts of Patient- and Family-Centered Care l 10 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 l 11 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 l 12 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 l 13 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) l 14 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). 15

Care Continuum Components 16 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 17 6. Organization Readiness Data Collection and Use l Develop a system to collect patient-level race and ethnicity information. l Develop a system to collect patient language information. l 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 18 6. Organization Readiness Patient, Family, and Community Engagement l Collect feedback from patients, families, and the surrounding community. l Share information with the community about the hospital’s efforts to meet unique patient needs.

Changing Demographics in Maryland: Census 2010 Data 19

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 20 DHMH, Office of Minority Health and Health Disparities

Allegany, Garrett, Montgomery & Washington Counties’ Population Statistics: Race, Ethnicity, Language, & Foreign Born Status 21 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. 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 Census 2010 population statistics 22 United States Maryland Howard County Frederick 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% 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% ------ 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% 23 A majority of Latino and Asian American residents in Maryland speak a language other than English at home.

Percent of County Residents Speaking Non. English Languages By Race/Ethnicity 24 Census 2010 population statistics United States Maryland Howard County Frederick 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 25

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. ” 26 Institute of Medicine (2003). Unequal Treatment

What causes health disparities? 27 • 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 28 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, 212. 23 1, 000. 00 765. 89 800. 00 713. 56 600. 00 400. 00 200. 00 148. 34 169. 84 - 29 White, Non. Hispanic Black, Non. Hispanic Asian and NH/PI, American Indian / Non-Hispanic AN , Non-Hispanic Race / Ethnicity Category Other, Non. Hispanic

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 - 30 White, Non. Hispanic Black, Non. Hispanic Asian and NH/PI, American Indian / Non-Hispanic AN , Non-Hispanic Race / Ethnicity Category Other, Non. Hispanic

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, Non. Hispanic 31 Black, Non. Hispanic Asian and NH/PI, American Indian / Non-Hispanic AN , Non. Hispanic Race / Ethnicity Category Other, Non. Hispanic

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 36. 49 20. 00 13. 56 8. 69 1. 72 - 32 White, Non. Hispanic Black, Non. Hispanic Asian and NH/PI, American Indian / Non-Hispanic AN , Non-Hispanic Race / Ethnicity Category Other, Non. Hispanic

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 33 White, Non. Hispanic Black, Non. Hispanic Asian and NH/PI, American Indian / Non-Hispanic AN , Non-Hispanic Race / Ethnicity Category Other, Non. Hispanic

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 0 34 White, Non-Hispanic Black, Non-Hispanic Asian and NH/PI, American Indian / AN Other, Non-Hispanic Race / Ethnicity Category

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 35 Hispanic Asian and NH/PI, American Indian / AN Other, Non-Hispanic Race / Ethnicity Category

National studies show significant racial/ethnic inequalities in access and quality of care 36

Pain medication offered in the emergency department for long bone fractures 37 Todd KH, JAMA 1993, 269: 1537 -9; Todd KH, Ann Emerg Med 2000, 35: 1116;

Pain medication offered in the emergency department for long bone fractures l Additional studies (1 hospital each) show no racial/ethnic disparities in analgesia for long bone fracture – – 38 New York San Francisco Bijur et al. , Am J Emerg Med 2008; Fuentes et al. , Acad Emerg Med, 2002

Which study is right? l Nationally, inequalities exist in some hospitals and not in others. – l AND Research shows that minority patients tend to receive care in poorer quality hospitals – 39 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 40

Disparities measurement lags behind quality measurement l Not all organizations collect race/ethnicity data – – – l Half of hospitals “eyeball” their patients – 41 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 l 42 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? 43

Cesarean section deliveries among mothers by race, MA, 2000 -2004 44 *Non-Hispanic Center for Health Information and Statistics, MDPH

Cesarean section deliveries among mothers by specific racial/ethnic group 45

Why is more detail better? l l There is variation within ethnic groups Some terms don’t describe a whole population very well – 46 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. 48

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” 49

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 50

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 51

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 52

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 53

10 MINUTE BREAK 54

Collecting the Data 55

Why the data collection technique matters l Accurate data collection – l l Reflect how patients describe themselves Prevent patients’ concerns about being asked about potentially sensitive information – – 56 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 l l l 57 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 58

Hi, my name is Sarah Oo 59

Hi, my name is Sarah Oo 60

My name is Anuj Goel 61

Daeven and Riyan 62

If the patient is a child l l 63 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 l White l African American l Asian or Pacific Islander l American Indian/Eskimo/Aleut l Biracial l Other l Unknown 64 Revised Race Categories l White l Black or African American l Asian l Native Hawaiian or Other Pacific Islander l American Indian or Alaska Native l Other l Unknown or Cannot be Determined l Declined to Answer

HSCRC Other Fields/Categories Country of Origin/Birth l List of 262 Country Names l Patient-Identified l Other l Declined to Answer l Unknown 65 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 66

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. 67

Why use this introduction? l Recent study at Northwestern Memorial Hospital – – 68 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 l Government recommendation l Needs assessment l Personal gain l 69

Testing introductions l l 70 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 l l 71 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 l Of the participants who were not completely comfortable reporting their race and ethnicity – – l 72 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 73 • Unavailable © 2009 by the Health Research and Educational Trust

Race Question Which category best describes your race? l l l l 74 l 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: ____. ” 75 © 2009 by the Health Research and Educational Trust

How to address patients’ concerns 76

Most patients agree it is important to collect race/ethnicity data l “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 l “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 l “How concerned would you be that this data could be used to discriminate against patients” – – 79 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 l l l 80 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: l They feel their privacy and patient rights are being respected l Data collection does not take too much time and cause them to be late for an appointment So you can: l Ensure data collection occurs in a space where patients can speak privately – l 81 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: l The questions come from a place of concern and that the data will serve a positive and valuable purpose l Their care will not be affected l The data will only be reported in a group l They do not feel forced to provide the information So you can: l Use the introduction to: – – – 82 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: l They have all of the information they need and their concerns and questions are addressed l They feel the questions provide them with choices that allow them to describe their identity So you can: l Ask every patient about race/ethnicity in the same way l Ensure that if patients have any questions, they are answered and concerns addressed 83

Challenging the need to answer l l l 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 l l “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? – – 85 Northwestern Memorial Hospital study discussed earlier These statements do not make patients more comfortable

Key Points l l l 86 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 l We will now have the opportunity to practice patient data collection, and training hospital staff, via two different sets of role plays. – l 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 88

Sources l l 89 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

Questions 90

About the Center on Health Disparities l l l 91 Learn more on the web: www. adventisthealthcare. com/disparities Visit us on Facebook: http: //www. facebook. com/Health. Disparities Look for us in your inbox: Monthly CHD e-newsletter