Collecting Race, Ethnicity, and Primary Language Information: A Foundation for Improving Quality of Care for Diverse Po

1. OVERVIEW Collecting Race, Ethnicity, and Primary Language Information: A Foundation for Improving Quality of Care for Diverse Populations INSERT YOUR NAME INSERT NAME OF YOUR ORGANIZATION INSERT DATE Insert your Logo © 2007 by the Health Research and Educational Trust

2. Question HOW to collect relevant data to answer the following questions: • WHY and HOWdisparities occur • Which interventions are effective at reducing or eliminating disparities • What proportion of observed disparities are amenable to improvements in health care

3. What We Know: Disparities in Care Are a National Problem • African Americans are: • Less likely to have a kidney transplant, surgery for lung cancer, bypass surgery • More likely to have a foot amputation • More likely to die prematurely • Latinos/Hispanics are: • Less likely to receive pain medications • Chinese? Pakistanis? Croatians? Iranians?

4. CHANGING DEMOGRAPHICS:CHANGING NEEDS

5. Demographic Changes • The U.S. population grew by 13% between 1990 and 2000. (Andrulis et al. 2003) • Foreign-born population living in the US increased by 44% to 28.4 million people during this period. (U.S. Census Bureau 2002). • In 2000, the foreign-born population comprised 10 percent of the total population, its highest since 1930. (U.S. Census Bureau 2002) • Over 300 different languages are spoken in the U.S. and nearly 47 million people (18% of the U.S. population) speak a language other than English at home. (U.S. Census Bureau 2003)

6. Demographics of Your Community INSERT INFORMATION -How has it changed -Can you track it

7. To Improve Quality of Care for Diverse Populations: Collect Data • Quality of care can be hindered because of bias and prejudice • Quality of care can be hindered because of communication, language, or cultural barriers

8. Health Care Disparities Are a Health Care Quality Issue • Measures of health care disparities are quality measures. • We can use quality improvement tools and techniques to address health care disparities. • But quality measures are not necessarily health care disparity measures unless you stratify by race, ethnicity, language.

9. Internal Reasons to Collect Data • Identifying differences in care and developing targeted interventions • Being responsive to communities: Pressing community health problems such as disparities in care can be addressed more effectively if health care organizations and health professionals build the trust of the community by documenting accomplishments • Linking race and ethnicity information to quality measures to examine disparities and undertake targeted interventions • Ensuring the adequacy of interpreter services, patient information materials, and cultural competency training for staff

10. External Reasons to Collect Data • Reporting to the Joint Commission on Accreditation of Healthcare Organizations • Reporting to CMS (payer, purchaser regulator, insurer, works through QIOs) • State mandates

11. Your Hospital or HCO Initiatives Insert initiatives your organization is undertaking to: • Reduce disparities/improve quality of care for diverse populations

12. Barriers to Collecting Data • Validity and reliability of data • Legal concerns (It is legal to collect!) • System/organizational barriers • Appropriate categories • Patients’ perceptions/language and culture • Staff discomfort in explicitly asking patients to provide this information

13. Recommendations for Standardization • Who provides the information—should always be patients or their caretakers. Should never be done by observation alone. • When to collect—upon admission or patient registration to ensure appropriate fields are completed when patient begins treatment • What racial and ethnic categories should be used—start with the OMB categories. Hospitals can provide more “fine-grained” categories if needed. • Where should data be stored—in a standard format for easy linking to clinical data. • Patient concerns—should be addressed upfront and clearly prior to obtaining information. • Staff training—need to provide ongoing training and evaluation. © 2007 by the Health Research and Educational Trust

14. What is the purpose of staff training? • To implement an efficient, valid, and reliable method of collecting information about patients’ racial/ethnic background and primary language that is acceptable to patients and staff • To provide registration/admission staff with information and tools they can use

15. Patients Are Comfortable Providing Information When they are given a reason for why it is being collected

16. Results from a study at Northwestern Memorial Hospital in Chicago showed that Most Patients Agreed That It Is Important to Collect Race/Ethnicity Data “It is important for hospitals & clinics to collect information from patients about their race or ethnic background.” Would you say that you: Strongly Agree 43% Somewhat Agree 37% Unsure 6% Somewhat Disagree 10% Strongly Disagree 4% Baker DW, Cameron KA, Feinglass J, Georgas P, Foster S, Pierce D, Thompson J, Hasnain-Wynia R. “Patients’ Attitudes Toward Health Care Providers Collecting Information About Their Race And Ethnicity.” J Gen Intern Med. Vol 20 (10). October 2005.

17. Even Stronger Support that Hospitals Should Examine 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.” Would you say that you: Strongly Agree 93% Somewhat Agree 4% Unsure 2% Somewhat Disagree 1% Baker DW, Cameron KA, Feinglass J, Georgas P, Foster S, Pierce D, Thompson J, Hasnain-Wynia R. “Patients’ Attitudes Toward Health Care Providers Collecting Information About Their Race And Ethnicity.” J Gen Intern Med. Vol 20 (10). October 2005.

18. Significant Concerns About How This Data Might Be Used “How concerned would you be that this data could be used to discriminate against patients?” Not concerned at all 34% A little concerned 15% Somewhat concerned 20% Very concerned 31% Baker DW, Cameron KA, Feinglass J, Georgas P, Foster S, Pierce D, Thompson J, Hasnain-Wynia R. “Patients’ Attitudes Toward Health Care Providers Collecting Information About Their Race And Ethnicity.” J Gen Intern Med. Vol 20 (10). October 2005.

19. Can we decrease patients’ concerns about collecting this information by providing the rationale for why we are collecting this information? Four possible rationales for collecting race/ethnicity: #1 – Monitoring quality of care (“monitoring”) #2 – Mandate to collect information (“mandate”) #3 – Staff training and hiring (“needs assessment”) #4 – Possible benefits for one’s care (“personal gain”) .

20. “Monitoring”rationale helps patients feel the most comfortable “We want to make sure that all our patients get the best care possible. 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.”

21. Introducing Topic to Patients:State Rationale Before Asking the Question • “We want to make sure that all our patients get the best care possible. 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.” • If you want to collect more granular information, add: “You can use general terms such as White, African-American, Latino, or Asian or you can use more specific terms like Irish, Mexican, Hawaiian, or Navajo. You can use more than one term if you like.”

22. Why Should We Collect This Information? • Monitor quality of care. • Design innovative programs to eliminate disparities and rigorously test them. • Know our patients so we can better meet their needs and show communities that we deliver the best care possible to them. • Satisfy JCAHO, CMS, etc. • Take a national leadership position and show other hospitals and HCOs what is possible.

23. “….But We Already Collect This Information!” • That may be true, but here (next set of slides) are results of a national study that examined race, ethnicity, and primary language data collection in hospitals. • The study shows that even if we are collecting it, we are not doing a good job.

24. Data Collection in Hospitals • The majority of hospitals report that they collect race data (78%-82%). Many do not collect ethnicity data. • Fifty-eight percent (58%) indicated that more than one unit or clinic within the hospital collect data. • Majority collect it by observing the patient and guessing. Source: Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals, Romana Hasnain-Wynia, Debra Pierce, and Mary A. Pittman, The Commonwealth Fund, May 2004

25. Are Hospitals Collecting Race/Ethnicity Data? Urban Rural No Mandate State Mandate Teaching Hosp. Non-Teaching Source: Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals, Romana Hasnain-Wynia, Debra Pierce, and Mary A. Pittman, The Commonwealth Fund, May 2004

26. Little Uniformity in Methods for Collecting Data Source: Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals, Romana Hasnain-Wynia, Debra Pierce, and Mary A. Pittman, The Commonwealth Fund, May 2004

27. Little Uniformity in Categories for Collecting Data Source: Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals, Romana Hasnain-Wynia, Debra Pierce, and Mary A. Pittman, The Commonwealth Fund, May 2004

28. Staff Training Will Provide the Following • Toolkit • Scripts • Categories • How to address concerns from patients