1. Nuts and Bolts of Collecting Patient Race, Ethnicity and Language Data: Staff Training October 1, 2010 Memphis, TN Aligning Forces for Quality National Program Office

2. 2 Purpose of this training We are implementing a standardized method of collecting race, ethnicity and language (R/E/L) data as self-reported by patients or their caregivers. You are key to ensuring that all data are collected consistently, accurately, professionally, and completely.

3. 3 Learning Objectives After this training session you will be able to: – Describe the reasons for standardizing the collection of patient R/E/L – Use scripts to ask each patient to self-identify his/her R/E/L – Address patient questions and concerns

4. 4 What are disparities in health care quality? “Racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities” Less likely to receive: – Cancer screening – Cardiovascular therapy – Kidney dialysis – Transplants – Curative surgery for lung cancer – Hip and knee replacement – Pain medicines in the ER

5. 5 Why collect standardized R/E/L data? We can ensure adequate interpreter services, patient information materials, cultural competency training for staff. We can link patient race, ethnicity and language data with clinical information to improve quality and examine any health care disparities. We can use quality improvement tools/techniques to address any health care disparities. By collecting this information, we can ensure that all patients receive high-quality care.

6. 6 Do disparities exist at [insert organization name]? We don’t know until we look at the data We can’t look at the data until we ask patients about their race, ethnicity and language

7. 7 Increasing legislative and regulatory attention to R/E/L data Health care reform – American Recovery and Reinvestment Act of 2009 – Patient Protection and Affordable Care Act of 2010 Joint Commission standards – Expanded requirements related to the collection of patient language data, including preferred spoken language and written communication needs – New requirement to collect patient-level demographic data on race and ethnicity

8. 8 “….but we already collect this information!” That may be true, but studies examining R/E/L data collection in hospitals and ambulatory practices show: – In many organizations that currently collect R/E/L data, not everyone is doing a good job. – Many registrars collect the information by observing the patient and guessing. Allowing the patient to self-identify will lead to more accurate and reliable data.

9. 9 Why are we making this change at [organization name] ? [Add text] Examples: “[Organization name] is committed to providing safe, timely, efficient, equitable, and patient-centered care. Because non-whites comprise [ x %] of our population, equity and quality demand attention.” “We believe that the best way to eliminate racial disparities and to elevate the overall quality of care for all is to create processes of care to systematically treat all patients equitably.” Provide the reason(s) why your organization will be collecting standardized patient self-reported race, ethnicity and language data.

10. 10 Impact on registration/admitting staff The collection of standardized race, ethnicity and language information from all patients will affect: – Staff training – Registration system and processes – Communication with patients – How data are used to monitor quality

11. 11 What is standardized data collection? Standardized categories across the organization Patient self-reports race, ethnicity and language – No more “eyeballing” the patient – Data is collected from all patients Telling the patient why we are collecting his/her race, ethnicity and language

12. 12 Race, ethnicity and language categories Race Black White Asian American Indian/Alaska Native Native Hawaiian /Pacific Islander Multiracial* Declined* Unavailable* Language English Spanish Other Declined Unavailable *This designation indicates a modification to the OMB R/E categories Ethnicity Hispanic Not Hispanic Declined* Unavailable* If your organization will use more granular categories, you can add them to this slide.

13. 13 Challenging assumptions – guess their race

14. 14 Race definitions American Indian or Alaska Native: Person having origins in any of the original peoples of North and South America (including Central America) and maintains tribal affiliation. Asian: Person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent. Black or African American: Person having origins in any of the black racial groups of Africa. Native Hawaiian or Other Pacific Islander: Person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands. White: A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. Multiracial*: A person having more than one or a combination of the above origins. Declined*: Patient is unwilling to choose a race category or cannot identify him/herself with one of the listed races. Unavailable*: Patient is physically unable to respond. Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/

15. 15 Challenging assumptions – guess their ethnicity

16. 16 Ethnicity definitions Hispanic or Latino: Person of Cuban, Mexican, Puerto Rican, South or Central American decent, regardless of race. Non-Hispanic or Latino: Person not of Hispanic or Latino ethnicity. Declined*: Patient is unwilling to provide an answer to the ethnicity question or cannot identify him/herself as Hispanic or Not Hispanic. Unavailable*: Patient is physically unable to respond. Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/

17. 17 Language definitions Preferred spoken: the language a patient feels most comfortable speaking with their doctor or nurse Preferred written: the language a patient feels most comfortable reading medical or health care instructions Declined: A person who is unwilling to state a language preference. Other: Any stated language other than English or Spanish Unavailable: Patient is physically unable to respond. If your organization will not ask preferred written language, you can remove that text from this slide.

18. 18 How will patient registration change? Explaining why we are collecting race, ethnicity and language information Asking the race, ethnicity and language questions Responding to patient concerns or questions

19. 19 Recommended script for letting patients know “We want to make sure that all our patients get the best care possible. We would like you to tell us your racial/ethnic background and preferred language so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality care.” Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If your organization is going to use a different script, you can use that text on this slide.

20. 20 Recommended script for patient’s ethnicity “First, do you consider yourself Hispanic or Latino?”  Yes  No  Declined  Unavailable Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If your organization is going to use a different question, you can use that text on this slide.

21. 21 Ethnicity screen Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If applicable, you can include a screen shot that will show registration staff any changes to the computer screen that staff see during registration

22. 22 Recommended script for patient’s race “Which category best describes your race?”  American Indian/Alaska Native  Asian  Black/African American  Native Hawaiian/Other Pacific Islander  White  Multiracial  Declined  Unavailable Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If your organization is going to use a different question, you can use that text on this slide.

23. 23 Race Screen Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If applicable, you can include a screen shot that will show registration staff any changes to the computer screen that staff see during registration

24. 24 Recommended script for patient’s preferred language “What language do you feel most comfortable speaking with your doctor or nurse?”  English  Spanish  Other  Declined  Unavailable “What language do you feel most comfortable reading medical or health care instructions?”  English  Spanish  Other  Declined  Unavailable Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If your organization is going to use different questions, you can use that text on this slide.

25. 25 Source: Cambridge Health Alliance (Cambridge, MA) “I Speak” Poster

26. 26 Language Screen Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ If applicable, you can include a screen shot that will show registration staff any changes to the computer screen that staff see during registration

27. 27 What do patients think? Most patients (80%) think hospitals and clinics should be collecting data. Most patients (97%) also think it’s important for hospitals and clinics to examine differences in quality. Some patients are concerned about how the data will be used. Baker, DW, et al. Patients’ Attitudes toward Health Care Providers Collecting Information about Their Race and Ethnicity. Journal of General Internal Medicine. Volume 20 (10): 895 – 900. August 2005.

28. 28 Addressing patient concerns Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ Patient ResponseSuggested ResponseCode “I'm American." Would you like to use an additional term, or would you like me to just put American? Other or as specified "Can't you tell by looking at me?" Well, usually I can. But sometimes I'm wrong, so we think it is better to let people tell us. I don’t want to put in the wrong answer. I’m trained not to make any assumptions. As specified If using open-ended option: "I don’t know. What are the responses?” You can say White, Black or African American, Latino or Hispanic, Asian, American Indian or Alaska Native, Pacific Islander or Native Hawaiian, some other race, or any combination of these. You can also use more specific terms like Irish, Jamaican, Mexican As specified "I was born in Nigeria, but I've really lived here all my life. What should I say?" That is really up to you. You can use any term you like. It is fine to say that you are Nigerian. As specified

29. 29 Addressing patient concerns Source: HRET Toolkit, http://www.hretdisparities.org/ accessed on Sept 16, 2009http://www.hretdisparities.org/ Patient ResponseSuggested Response Code "I'm human." Is that your way of saying that you don’t want to answer the question? If so, I can just say that you didn't want to answer. Declined “It’s none of your business.”I'll just put down that you didn't want to answer, which is fine.Declined "Who looks at this?" The only people who see this information are registration staff, administrators for the hospital, and the people involved in quality improvement. "Are you trying to find out if I'm a US citizen?” No. Definitely not! Also, you should know that the confidentiality of what you say is protected by law, and we do not share this information with anyone.

30. 30 What do staff think? “It will take too much time to ask these questions” “Patients will get angry if we ask these questions” “It’s illegal to collect this information” “We don’t need to collect this information, we already know who our patients are” “I’m uncomfortable asking these questions”

31. 31 Questions?