Measuring Health Equity: Collecting Patient/Client ...

Measuring Health Equity: Collecting Patient/Client ...

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 Agenda 1. 2. 3.

4. 5. 6. 7. 8. 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

Discussion Guidelines 1. 2. 3. 4. 5. 6. 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. 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) 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 Overview of Health Equity Canadian Medical Association 25/06/13 Differences in health which are not only unnecessary and avoidable but, in HEALTH addition, are considered unfair and unjust.

INEQUITIES (Whitehead & Dahlgren, 2006) 6 Aims of Quality Care (Institute of Medicine, 2001) Effective Timely Efficient Quality Care Safe

Equitable Person Centered 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

Measuring Health Equity in the Toronto Central LHIN Measuring Health Equity Video https:// www.youtube.com/watch?annotation_id=annotation_1832509363&f eature=iv&src_vid=jBGOm-jtDVc&v=iUf0xoRwLkA History of Measuring Health Equity Project We Ask Because We Care: The Tri-Hospital +

TPH Health Equity Data Collection Research Project Report Learn & Expand: Build on experiences in first year of data collection Evaluate and Use Data:

Increase scope of the project to include data reporting and use 2014-2016 2016-2019 2009-2012 2013-2015 Initial Implementation

of Data Collection: 17 Hospitals plan roll-out for April 2013, 16 CHCs come on board 2016-2018 Improve Data Quality: Continue expanding and start looking at data quality

13 2019Expand to Home and Community Care: Pilot at Circled of Care Toronto Central LHIN 8 Core Questions Language What language would you feel most comfortable speaking in with your health-care provider?

Born in Canada Were you born in Canada? Racial or Ethnic Group Which of the following best describes your racial or ethnic group? Disability Gender Sexual

Orientation Income #Ppl income supports Do you have any of the following? What is your gender? What is your sexual orientation? What was your totally family income before taxes last year? How many people does this income support? Is it legal to ask these questions?

Yes. Not only is it legal, it is encouraged by the Ontario Human Rights Commission Why Collect Demographic Data through standardized questions? Considered the gold standard in health equity practice because it: Standardizes the way we capture data in multiple sectors first time we can compare apples to apples Enables tracking inequities in access and outcomes across the system better planning Goes beyond independent research

projects & knowing who we serve Drives systemic action Using patient/client demographic data System Level Organization Level Individual Level Understand patient/client needs Identify who is being served,

report + address inequities Fund and plan for equitable health care Lessons from Rolling out Data Collection Clients ok with

Address staff Develop clear responding Advocates have called for data collection Client Comfort Standardize data entry practices to improve quality Data Entry

discomfort through training Build inclusive & respectful spaces Staff Discomfort Implementing changes can be more challenging than introducing

new practices New vs Old Practices plan for retrieving data Data Reporting Equal Care Equitable Care Health Equity Vision

Data Quality Indicator: CHC Missing Equity Data Rates and PNA/DNK rates per question FY17/18 Language Born in Canada Race/Ethnicity PNA/DNK 5.0%0.0% 7.7% 5.0% 1.3%

4.2% Disability 13.4% Gender 6.0% 0.8% Sexual Orientation Income # of ppl income supports

Missing 11.1% 10.6% 11.0% 4.0% 28.5% 8.6%

13.6% 19 Data Quality Indicator: Missing Equity Data Rates per 8 Questions FY17/18 Average 16% Median 10% cut off for missing data 15.3%

15.2% 14.2% 14% 11.7% 12% 11.5% 10.1% 10% 8%

13.7% 9.1% 7.6% 6% 4.3% 4.1% 4% 2.8% 2%

1.5% 0.5% 1.3% 1.0% 0% Language Born in Canada Race/Ethnicity Disability

Gender Sexual Orientation Income # of ppl income supports Missing data and PNA/DNK data rate graphs include both the average and the median. While an 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%. 20

Data Quality Indicator: Prefer Not to Answer Rates per 8 Questions FY17/18 Average Median 10% cut off for PNA 35% 29.0% 30%

27.0% 25% 20% 16.1% 15% 13.4% 12.8% 11.5%

11.3% 9.4% 9.1% 10% 7.0% 5.1% 5% 0%

2.7% 0.3% Language 3.6% 0.8% Born in Canada 0.5% Race/Ethnicity Disability

Gender Sexual Orientation Income # of ppl income supports Missing data and PNA/DNK data rate graphs include both the average and the median. While an 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. 21 Missing data rates per hospital ranged from 2.0% to 63.7%.

HOW we ask is as/more important than what we ask 8 TC LHIN Questions: What they mean, Why we collect them LANGUAGE 1.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? Its helpful for us to know because we can use this information to provide interpreters BORN IN CANADA 2. Were you born in Canada? YES NO Prefer not to answer Do not know If NO, what year did you arrive in Canada? __________ Why do you want to know? Its helpful for us to know because this information will help us understand the health care experiences of newcomers to Canada- e.g. what types of supports would be helpful?

RACIAL/ETHNIC GROUP 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 Why do you want to know? Its helpful for us to know because 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

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) 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? Its helpful for us to know because knowing the types of accommodation we need will help us provide and plan for better care Source: https://understandingtheguidelines.ca/faqs/terminology/ GENDER Hospital 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 Why do you want to know? Its helpful for us to know because 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 GENDER CHC 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 Why do you want to know? Its helpful for us to know because 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 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? Its helpful for us to know because we can look at this data to ensure that all clients are getting the best care possible we dont want to assume clients sexual orientation when we provide them with care and services. INCOME - Hospital

7. What was your total family income before taxes last year? Check ONE only $0 - $29,999 $120,000 - $149,999 $30,000 - $59,999 $150,000 or more $60,000 - $89,999 Do not know $90,000 - $119,999 Prefer not to answer 8. How many people does this income support? _______ person(s) Do not know Prefer not to answer Why do you want to know? Its 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 INCOME - CHC 7. What was your total family income before taxes last year? Check ONE only $0 - $14,999 $35,000 - $39,999 $15,000 - $19,999 $40,000 - $59,999 $20,000 - $24,999 $60,000 OR MORE $25,000 - $29,999

Do not know $30,000 - $34,999 Prefer not to answer 8. How many people does this income support? _______ person(s) Do not know Prefer not to answer Why do you want to know? Its 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 Collecting Demographic Data

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) 36

3 key messages to share SAMPLE MESSAGES These questions will tell us who our patients are This will take a few minutes. Its completely voluntary, so you can choose prefer not to answer to any of questions.

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 Critical Steps

Sample Workflow Interview based collection Introduce questions Staff addresses client questions & comments Staff uses data codes Sample Workflow Paper based Collection Introduce

questions Opportunity to ask questions Follow up with client on missing data Important points to remember If the client speaks a different language, use one of the 11 translated question forms.

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

44 Data Quality 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 data1 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 Arts, D. G. T., De Keiser, N. F., & Scheffer, G. (2002). Defining and improving data quality in medical registries. Journal of the 46 American Medical Informatics Association, 9, 600-611. 1 Data Quality Indicators < 10% Data Quality 48

Resources and Materials Staff Training Materials Checklist Patient Information Checklist Patient Information Checklist Torontohealthequity.ca Practice

Asking the 8 Core Demographic Questions Hospital https://youtu.be/kSz1B7zDaWs What did you like about the interaction between the staff member and patient/client? What do you think could have been done differently or better? Asking the 8 Core Demographic Questions - CHC

https://youtu.be/nEiRF9tdby4 What did you like about the interaction between the staff member and patient/client? What do you think could have been done differently or better? Practice session Optional demo- patient/client volunteer needed Form groups of 3: Patient/Client, Staff, Observer Review practice exercise

This is a chance to practice: introducing/presenting the Demographic Data Form answering any questions or responding to any concerns patients/clients may present Practice Introducing the form. Wrap-up Takeaway Points The demographic questions are additional health related questions Patients and clients are willing to share this information

Some patients and clients are likely to have experienced discrimination and harassment and may be reluctant to answer questions Best Practice: Data collection should include follow-up/interaction with patient/client The approach of the data collector is the best predictor of patient and client engagement Embed data collection into ongoing practices Contact Information

For more information/support: [insert name of key contact person] Or visit www.torontohealthequity.ca

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