Measuring Health Equity: Collecting Patient/Client Demographic Data in Toronto Central LHIN

1. Measuring Health Equity: Collecting Patient/Client Demographic Data in Toronto Central LHIN [Organization Name] [Date] Acknowledgement: Adapted from “Measuring Health Equity in Toronto Central LHIN” Training Model. Developed by Health Equity Office, Sinai Health System. With support from Toronto Central LHIN. More at torontohealthequity.ca

2. Agenda Introductions Understanding Health Equity The mandated TC LHIN Health Equity Questions Demographic Data Collection Data Quality Resources and Materials Role Playing Scenarios Next Steps & Evaluation

3. Discussion Guidelines • Listen carefully while others are speaking. • Speak from your own experience. • Discuss issues that are raised in the workshop. • Put your phone on silent. • When needed, ask for clarification. • Respect confidentiality.

4. What we want to accomplish today By the end of the session, participants will have: Develop knowledge of health equity principles A clear understanding of the purpose of the 8 TC LHIN standardized questions Knowledge on best practices in demographic data collection specific to CHCs and hospitals The ability to answer questions from patients/clients, staff, community partners, etc. (i.e. resources, where to get  answers)

5. Introductory Activity Learning about Health Inequities… • Please walk around the room, read the statistics on the wall, and then stand beside the statistic that most affects, surprises or interests you… • We will then spend a few minutes sharing

6. Overview of Health Equity

7. Canadian Medical Association 25/06/13

8. Differences in health which are not only unnecessary and avoidable but, in addition, are considered unfair and unjust. (Whitehead & Dahlgren, 2006) HEALTH INEQUITIES

9. 6 Aims of Quality Care (Institute of Medicine, 2001)

10. What is health equity? “Health equity is the ideal state in which all people are able to reach their full health potential and receive high quality care that is fair and appropriate from each persons perspective, no matter where they live, who they are, or what they have.” – Health Quality Ontario, 2016 • Equal care ≠ Equitable care

11. Measuring Health Equity in the Toronto Central LHIN

12. Measuring Health Equity Video https://www.youtube.com/watch?annotation_id=annotation_1832509363&feature=iv&src_vid=jBGOm-jtDVc&v=iUf0xoRwLkA

13. History of Measuring Health Equity Project We Ask Because We Care: The Tri-Hospital + TPH Health Equity Data Collection Research Project Report Evaluate and Use Data: Increase scope of the project to include data reporting and use Learn & Expand: Build on experiences in first year of data collection 2016-2019 2009-2012 2014-2016 2013-2015 2019- 2016-2018 Expand to Home and Community Care: Pilot at Circled of Care Improve Data Quality: Continue expanding and start looking at data quality Initial Implementation of Data Collection: 17 Hospitals plan roll-out for April 2013, 16 CHCs come on board

14. Toronto Central LHIN 8 Core Questions

15. Is it legal to ask these questions? Yes. Not only is it legal, it is encouraged by the Ontario Human Rights Commission

16. Why Collect Demographic Data through standardized questions? Considered the gold standard in health equity practice because it:

17. Using patient/client demographic data… System Level Organization Level Individual Level

18. Lessons from Rolling out Data Collection • Clients ok with responding • Advocates have called for data collection • Address staff discomfort through training • Build inclusive & respectful spaces • Develop clear plan for retrieving data • Client Comfort • Staff Discomfort • Data Reporting • Standardize data entry practices to improve quality • Implementing changes can be more challenging than introducing new practices • Equal Care ≠ Equitable Care • Data Entry • New vs Old Practices • Health Equity Vision

19. Data Quality Indicator: CHC Missing Equity Data Rates and PNA/DNK rates per question FY17/18

20. Data Quality Indicator:‘Missing Equity Data Rates per8 Questions ’ FY17/18 Missing data and PNA/DNK data rate graphs include both the average and the median. “Whilean average has traditionally been a popular measure of a mid-point in a sample, it has the disadvantage of being affected by any single value being too high or too low compared to the rest of the sample. This is why a median is sometimes taken as a better measure of a mid point.” Missing data rates per hospital ranged from 0.2% to 70.3%.

21. Data Quality Indicator:‘Prefer Not to Answer Rates per8 Questions ’ FY17/18 Missing data and PNA/DNK data rate graphs include both the average and the median. “Whilean average has traditionally been a popular measure of a mid-point in a sample, it has the disadvantage of being affected by any single value being too high or too low compared to the rest of the sample. This is why a median is sometimes taken as a better measure of a mid point.” Missing data rates per hospital ranged from 2.0% to 63.7%.

22. HOW we ask is as/more important than what we ask

23. 8 TC LHIN Questions: • What they mean, Why we collect them

24. LANGUAGE • What language would you feel most comfortable speaking in with your health-care provider? Check ONE only • *34 response options based on the list of most interpreted languages in TC LHIN, in addition to: • Other (Please specify) • Prefer not to answer •  Do not know Why do you want to know? “It’s helpful for us to know because… … we can use this information to provide interpreters”

25. BORN IN CANADA Why do you want to know? “It’s helpful for us to know because… 2. Were you born in Canada?  YES  NO  Prefer not to answer  Do not know If NO, what year did you arrive in Canada? __________ … this information will help us understand the health care experiences of newcomers to Canada- e.g. what types of supports would be helpful?”

26. RACIAL/ETHNIC GROUP Why do you want to know? “It’s helpful for us to know because… • 3. Which of the following best describes your racial or ethnic group? Check ONE only • *15 response options, in addition to: • Mixed heritage (Please specify) • Other (Please specify) • Prefer not to answer •  Do not know … this can provide information on patient diets or need for genetic testing” … we can use this data to reach out to vulnerable groups we know get less screening tests- e.g. cancer screening”

27. “Scientists and doctors have spent decades trying to understand what makes African-American women so vulnerable to losing their babies. Now, there is growing consensus that racial discrimination experienced by black mothers during their lifetime makes them less likely to carry their babies to full term” (Franz, 2017)

28. DISABILITY • 4. Do you have any of the following? Check ALL that apply • Chronic illness  Sensory disability •  Developmental disability  Other (Please specify) •  Drug or alcohol dependence  None •  Learning disability  Prefer not to answer •  Mental illness  Do not know •  Physical disability Why do you want to know? “It’s helpful for us to know because… …knowing the types of accommodation we need will help us provide and plan for better care”

29. Source: https://understandingtheguidelines.ca/faqs/terminology/

30. GENDER – Hospital Why do you want to know? “It’s helpful for us to know because… • 5. What is your gender? Check ONE only • Female  Other (Please specify) • Intersex  Prefer not to answer •  Male Do not know • Trans- Female to Male • Trans- Male to Female … it provides information we need for things such as room assignment or types of tests to plan for (e.g. pap smear, blood test interpretation, …) … we can use this data to understand the health care experiences of vulnerable groups such as trans clients”

31. GENDER – CHC Why do you want to know? “It’s helpful for us to know because… • 5. What is your gender? Check ONE only • Female  Two-Spirit • Intersex  Other (Please specify) •  Male  Prefer not to answer • Trans- Female to Male  Do not know • Trans- Male to Female … it provides information we need for things such as room assignment or types of tests to plan for (e.g. pap smear, blood test interpretation, …) … we can use this data to understand the health care experiences of vulnerable groups such as trans clients”

32. SEXUAL ORIENTATION • 6. What is your sexual orientation? Check ONE only • Bisexual  Two-Spirit • Gay  Other (Please specify) • Heterosexual (“straight”)  Prefer not to answer • Lesbian  Do not know •  Queer Why do you want to know? “It’s helpful for us to know because… … we can look at this data to ensure that all clients are getting the best care possible” … we don’t want to assume clients’ sexual orientation when we provide them with care and services.”

33. INCOME - Hospital Why do you want to know? “It’s helpful for us to know because… … we want to understand the link between income and health care” … information on how much a client makes could be relevant to medical prescriptions or ability for clients to follow directions (e.g. access to a refrigerator) or ability to make it to the hospital”

34. INCOME - CHC Why do you want to know? “It’s helpful for us to know because… … we want to understand the link between income and health care” … information on how much a client makes could be relevant to medical prescriptions or ability for clients to follow directions (e.g. access to a refrigerator) or ability to make it to the hospital”

35. Collecting Demographic Data

36. Toronto Central LHIN Requirements Community Health Centres (CHCs) Demographic data collection of 1 of the 4 new health equity questions (racial/ethnic group, disabilities, gender, sexual orientation) on at least 75% of returning and new clients. Acute Care Hospitals Demographic data collection on at least 75% of patients in: • Inpatient • Day Surgery • 3 high-volume areas (e.g. Medical Diagnostics, ED) Rehab/CCC and Specialty Hospitals Demographic data collection on at least 75% of patients in: • Inpatient • Outpatient (as applicable)

37. 3 key messages to share

38. SAMPLE MESSAGES These questions will tell us who our patients are It will help us improve services and ensure quality care Your information will be kept confidential and will only be available to people taking care of you This will take a few minutes. It’s completely voluntary, so you can choose ‘prefer not to answer’ to any of questions.

39. Critical Steps

40. Sample Workflow – Interview based collection Staff addresses client questions & comments Introduce questions Staff uses data codes

41. Sample Workflow – Paper based Collection Follow up with client on missing data Introduce questions Opportunity to ask questions

42. Important points to remember • If the client speaks a different language, use one of the 11 translated question forms.

43. Important points to remember cont. Hospitals • If the client speaks a different language, use one of the 11 translated question forms.

44. Important points to remember cont. CHCs • If the client speaks a different language, use one of the 11 translated question forms.

45. Data Quality

46. Data Quality - Overview “The totality of features and characteristics of a data set that bear on its ability to satisfy the needs that result from the intended use of the data”1 • For the Measuring Health Equity project we want to assess whether our data allows us to: • Understand who we serve • Identify patient and client needs • Identify existing health inequities • Provide basis for developing services and health inequity interventions 1Arts, D. G. T., De Keiser, N. F., & Scheffer, G. (2002). Defining and improving data quality in medical registries. Journal of the American Medical Informatics Association, 9, 600-611.

47. Data Quality Indicators • – < 10%

48. Data Quality

49. Resources and Materials

50. Staff Training Materials Checklist