[Organization Name] [Date]

[Organization Name] [Date]
Measuring Health Equity: Collecting Patient/Client Demographic Data in Toronto Central LHIN [Organization Name] [Date] This is a generic presentation that can be used and adapted for training for the Measuring Health Equity demographic data collection project. Note that some slides are specific to CHCs or Hospitals. Make sure to delete the slides that are not applicable to your organization. If adapted or if slides are used from this presentation you must include the following acknowledgement: “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” 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 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 Refer to agenda in your package

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. As we go forward, what to keep in mind (key points below but feel free to adapt as you like) When working together as a group on the topic of health equity, it is important that we establish some common ground rules of how we will be working together for the next two hours.

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) At the end of the session, you will have… PARTICIPATION CRITICAL, want this to be a discussion

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 STATISTICS ACTIVITY (If the Group is too large turn this activity into a quiz) See Appendix A for Statistics slides Around the room are examples of health inequities. It is not a coincidence that these are protected groups under human rights law, and they experience the greatest health inequities. Ask participants to review the posted data and after 5 minutes choose a statistic that they are surprised by. Tell them to stand beside that statistic. Go around to hear from participants with them explaining why statistics surprising. Start off with your name, what you do at the hospital/CHC What most surprises you in these stats? Has the most impact on your work? What do the stats tell us about health equity/inequities? Comment This exercise was intended to help us begin thinking about our own perspectives on social determinants of health, diversity and equity **You may also take this opportunity to describe the differences between racialized groups, marginalized groups and new immigrants

Overview of Health Equity

Canadian Medical Association 25/06/13
To talk about health equity, we have to start by talking about social determinants of health. These are systematic social and economic conditions that influence a person’s health. They include income, housing, education, gender and race, and according to the World Health Organizations and the Canadian Medical Association (who created the inforgraph of the slide) impact individual’s and population’s health more than biological and environmental conditions as well as access to health care system. This is consistently proven with current research. (Next slide) Canadian Medical Association 25/06/13

HEALTH INEQUITIES Differences in health which are not only unnecessary and avoidable but, in addition, are considered unfair and unjust. (Whitehead & Dahlgren, 2006) So in Canada and around the world we are seeing health discrepancies between population that are not only unnecessary and avoidable but, are also unfair and unjust. This is known as health inequities.

6 Aims of Quality Care (Institute of Medicine, 2001)
Effective Efficient Equitable Person Centered Safe Timely With this acknowledgement that people’s health is impacted by social determinants of health, the Institute of Medicine in 2001 make one of it’s 6 quality aims to provide equitable care. Thus, it’s not enough to provide safe, timely, efficient, effective, and person centered care, you must look at how people are affected by these social determinants in order to provide best quality care.

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 So with everything that has been mentioned, Ask group how they define health equity. How many of you watched the Measuring Health Equity Overview video? Helpful to see what is happening with demographic data collection in Toronto Central Region Ground-breaking for Toronto to be leading this initiative It is important to remember: Equity is about meeting patient/client needs while minimizing any avoidable differential outcomes based on individual characteristics. It’s not about equal care because we don’t have the exact same needs- we should be treated differently based on our unique needs and barriers. Evidence says that something about the health-care interaction is associated with inequities. It’s not about staff member A or staff member B being discriminatory, it’s much bigger than that and about understanding system wide barriers as well. Collection is happening throughout US, UK and Australia (other countries in Europe but not consistent). Toronto is leading this in Canada (ground-breaking) Equal care ≠ Equitable care

Measuring Health Equity in the Toronto Central LHIN

Measuring Health Equity Video
A video about the Measuring Health Equity TC LHIN Initiative. Link to video: Helpful to see what is happening with demographic data collection in Toronto Central Region Brand new for hospital sector Reflects a change to a standardized collection methods for CHCs (they already collected demographics) Ground-breaking for Toronto to be leading this initiative

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 Initial Implementation of Data Collection: 17 Hospitals plan roll-out for April 2013, 16 CHCs come on board Improve Data Quality: Continue expanding and start looking at data quality 2019- Expand to Home and Community Care: Pilot at Circled of Care We Ask Because We Care: Develop evidence based tool for Toronto context. 4 year process among four organizations: Mount Sinai Hospital (MSH), St. Michael’s Hospital (SMH), the Centre for Addiction and Mental Health (CAMH) and Toronto Public Health (TPH). Through the development and pilot project trial of a socio-demographic questionnaire with a participation rate of over 80%, a set of eight questions and three optional questions is being recommended for wide-scale implementation. The organizations aimed to answer three key questions: What are the best methods to collect patient demographic data? What questions are most effective for capturing useful data while maximizing comfort of both staff and patients? What is the relationship between demographic factors (e.g., language, disability, etc.) and self-reported health? Initial Implementation: We went out to all 17 hospitals, met with CEOs, did staff training, developed online guide. We collaborated on data collection in CHCs to ensure we have a CHC-specific approach. Met with all 17 EDs and their teams, started training their staff. Learn and Expand: Many started small and began expansion As participation rate increased across organizations, imperative to ensure that data quality was excellent. As of 2016 TC LHIN began requesting organization to submitted yearly stratifications. Additionally, hospitals provided data to ICES for a system wide analysis. Lastly, organizations started using their data as they saw fit. 2019 Circle of Care pilot at Sinai Health System and potential expansion to Home and Community Care section

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 Do you have any of the following? Gender What is your gender? Sexual Orientation What is your sexual orientation? Income What was your totally family income before taxes last year? #Ppl income supports How many people does this income support? Which question do you think patients/clients would be least likely to answer? Question in order least sensitive to most sensitive All have shown to have direct connection to health equity All items are evidence-based, developed through “We Ask Because We Care” research project (available online)

Is it legal to ask these questions?
Yes. Not only is it legal, it is encouraged by the Ontario Human Rights Commission Yes, the Ontario Human Rights Commission strongly encourages organizations to collect and use demographic information to keep track of outcomes and promote equity. Also, Ontario’s Excellent Care for All Act, 2010 is a law that holds hospitals responsible for delivering quality health care. This law has health care organizations collect information from patients and clients about their experience. We learned that demographic information greatly impacts patient and client experiences and decisions about whether to use health care or not. We believe that we cannot fully understand patients’ and clients’ health care experiences without knowing more about who they are.

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 Standardizes the way we capture data in multiple sectors → first time we can compare apples to apples. This means we are able to compare data across departments, between similar organizations (hospital vs. hospital), and between different organizations (hospitals vs. chcs). Enables tracking inequities in access and outcomes across the system → better planning. We can see progress or regression from one year to the next as we are consistently collecting data. Allows the Toronto LHIN to not solely rely on small projects but be able to base it’s decisions on actual numbers and statistics. Goes beyond independent research projects & “knowing who we serve” → Drives systemic action

Using patient/client demographic data…
System Level Understand patient/client needs Identify who is being served, report + address inequities Fund and plan for equitable health care Organization Level Individual Level What are some possible uses? Individual: As simple as getting an interpreter, focused on strengthening patient/client-centred care. Using the correct pronoun with patients. Organizational level: Does the community we serve reflect where we are located in? [Insert examples of any health equity related work your organization has done and talk about how this data may enrich similar efforts] System level: Better planning. “Good decisions are not possible without good data”. Profile of high 3% using almost 40% of health care resources, tend to be complex care.

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 Patients: First concern that areas have raised and it’s turned out to be a non issue for most patients. Staff: Significant turn around in staff involvement. The key is training and meetings Impact on workflow: If staff are trained and the questions integrated appropriately in IT system, there should be minimum impact on workflow Methods: Recognize that there will not be one-fits-all solution. Approach driven by two: feasibility and data quality. MOST IMPORTANT POINTS TO REMEMBER Patients and clients are willing to provide information Training critical for staff. How we ask is extremely important. If patients/clients aren’t introduced the questions appropriately, they will not answer. Data Entry New vs Old Practices Health Equity Vision

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

Data Quality Indicator: ‘Missing Equity Data Rates per 8 Questions ’ FY17/18
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%.

Data Quality Indicator: ‘Prefer Not to Answer Rates per 8 Questions ’ FY17/18
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 2.0% to 63.7%.

HOW we ask is as/more important than what we ask
As mentioned earlier how we ask the question makes a huge difference on whether patients or clients will answer the questions. Before we proceed and discuss each question individually we are going to watch this Ted Talk by Tamekia Mizladi Smith on how to have difficult conversations. How to train employees to have difficult conversations URL: Description: It's time to invest in face-to-face training that empowers employees to have difficult conversations, says Tamekia MizLadi Smith. In a witty, provocative talk, Smith shares a workplace training program called "I'm G.R.A.C.E.D." that will inspire bosses and employees alike to communicate with compassion and respect. Bottom line: always let people know why their work matters. This talk was presented at an official TED conference, and was featured by our editors on the home page. About the speaker Tamekia MizLadi Smith · Performer, mentor Tamekia MizLadi Smith wants to start new conversations around involving non-clinical staff in healthcare. Length: 8:10

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

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 Language: Major service item Heavily impacts all pillars of quality, with overwhelming literature showing effects on patient safety, satisfaction, and adherence to medical instructions. The language that the patient would prefer to speak in, which may be their mother tongue. People may speak many languages, including English, but the one they feel most comfortable speaking in with their health-care provider is important to know. Points to remember: If the patient doesn’t see their preferred language, they should check “other” and fill in the name of the language. If there are languages listed that you don’t recognize or whose pronunciation you are uncertain, please go to to read more about them. Why do you want to know? “It’s 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? __________ New arrivals to Canada also qualify for services and supports base don how recently they have arrived. This piece can be used at the point of care. “Born in Canada” will be useful in understanding ‘healthy immigrant effect’: Immigrants arriving in Canada are in better health than the average Canadian. Within 10 years, that pattern reverses and immigrants suffer from poorer health than the average Canadian. Points to remember: Patients might be reluctant to answer this question fearing that you are trying to identify their citizenship status. They may believe that the health-care system will communicate with Immigration Canada in order to locate people who are not in Canada legally. Ensure that the patient is aware of your organization’s practices around sharing this information with his/her/their health-care team. Why do you want to know? “It’s 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 Patients may be reluctant to identify racially for a variety of reasons. Research tells us that about one in four people are uncomfortable identifying their racial or ethnic background. Some may believe that race is a discredited concept and that refusal to speak in terms of race will help us to gain racial equality. People who do not experience racism and some people who have been harmed by racism may also feel that race is irrelevant and may say that they “belong to the human race”. You can respond by saying that we know that certain groups in society are discriminated against because they are perceived to be different and that race is often the basis for this discrimination. However, having information about people’s racial identity can help us track whether certain groups may face more discrimination and may not receive the care that they deserve. The best practice is to have people self-identify racially. If they do not see a designation on the list that reflects their racial identity, they should provide one in the space for “other”. “Racial/Ethnic” group: Physicians we have spoken with say that they use this information for things like understanding tests, discussing diets with pregnant patients, and much more in addition to looking at inequities. Why do you want to know? “It’s 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) Most research on inequities in maternal health looks at race/ethnicity Evidence is overwhelming

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 Human rights information not medical information Disability is a physical (your body), mental (your mind) or intellectual (the way you process information) condition that limits your movements, senses or activities. Disability includes: Origin of these terms: Human Rights Code, i.e. this item was developed from a human rights approach to understanding disability. I.e. it’s not based on a medical model and is not intended to be a diagnostic tool In that sense, there is no ‘right’ or ‘wrong’ answer. It’s completely based on how the patient wants to identify Challenges AFTER one year: Moving away from medical framework, for both staff and patients If someone is coming in for treatment, does that mean that everyone has a disability? It’s only what the patient wants to identify High rates of ‘other’, which we always want to reduce. A look at those numbers reveals that many can fall under the existing categories (e.g. diabetes, cancer, HIV+, ADHD, etc). In a conversation with the patient, we encourage you to explore with the patient if their ‘other’ response fits in with the categories, but the ultimate decision is up to them. 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”

Source: https://understandingtheguidelines.ca/faqs/terminology/
Difference between sex, gender identity, sexual orientation Define terms for Gender identity is a person’s sense of self, specifically the sense of being male, female, both, or neither, and may be different from their biological sex. Intersex describes people whose bodies, reproductive systems, chromosomes and/or hormones do not easily fit the male or female biological categories. Trans Female to Male is a person who identifies as male but was born as a biological female. Trans Male to Female is a person who identifies as female but was but was born as a biological male. Two-Spirit refers to Aboriginal lesbian, gay, bisexual and trans individuals. It means having both female and male spirits within one person. Source:

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 Until recently, gender has been understood to be determined solely by a person’s anatomy. However, there is increasing acceptance that for many people, their bodily characteristics conflict with their gender identity. Some people born with female sex organs may identify more strongly with a male gender identity and some who were born with male sex organs may feel more comfortable identifying with the female gender. Gender identity is linked to a person’s sense of self, and the sense of being male, female, both or neither. Points to remember Some people may find this question intrusive. People who may be transitioning from male to female, or from female to male, may be concerned about who will have access to this information. Patients have the option to skip the question and you should reassure them that their data will be taken care of in the same manner that all their other sensitive information is Challenges one year in: Do not know what the categories mean so have a glossary handy or prepare short description Patients laugh, make jokes about trans and intersex categories: Recommend that staff do not engage, add that ‘we ask because we know that trans and intersex patients face harassment and discrimination in health care, we welcome everyone here’ Why do you want to know? “It’s 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 CHCs only: additional answer option for “two-spirit” Until recently, gender has been understood to be determined solely by a person’s anatomy. However, there is increasing acceptance that for many people, their bodily characteristics conflict with their gender identity. Some people born with female sex organs may identify more strongly with a male gender identity and some who were born with male sex organs may feel more comfortable identifying with the female gender. Gender identity is linked to a person’s sense of self, and the sense of being male, female, both or neither. Points to remember Some people may find this question intrusive. People who may be transitioning from male to female, or from female to male, may be concerned about who will have access to this information. Patients have the option to skip the question and you should reassure them that their data will be taken care of in the same manner that all their other sensitive information is Challenges one year in: Do not know what the categories mean so have a glossary handy or prepare short description Patients laugh, make jokes about trans and intersex categories: Recommend that staff do not engage, add that ‘we ask because we know that trans and intersex patients face harassment and discrimination in health care, we welcome everyone here’ Why do you want to know? “It’s 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? “It’s helpful for us to know because… Sexual orientation is who you are attracted to romantically. People define their sexual orientation in various ways. Sexual orientation is not to be confused with gender. Bisexual: is a person who is attracted to both men and women. Gay: is a person who is attracted to those of the same gender. This term is used by both men and women although many women prefer to be referred to as lesbian. Heterosexual (“straight”): describes a person who is attracted to the opposite gender. Lesbian: describes a woman who is attracted to other women. Queer: a term used by people who reject traditional sexual orientations. Two-Spirit: refers to Aboriginal lesbian, gay, bisexual and trans individuals. It means having both female and male spirits within one person. Challenges one year in: - Patients don’t understand ‘heterosexual “straight”: explain that it’s attraction to the opposite sex - Patients respond with “I’m the normal one”: staff have been responding with ‘they are all normal, which one applies to you? Perhaps you meant ‘heterosexual’) … 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.”

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 Item that patients are most uncomfortable about answering, trend for women to have higher ‘do not know’. Ask them to approximate. Many Canadians are uncomfortable answering a question about family income so clarify who will have access to this information and how privacy will be protected. There may be many reasons for patients to feel uncomfortable answering this question, including fear of being judged and fear of being reported to Canada Revenue Agency or other authorities. Patients have the right to skip the question/prefer not to answer. # ppl income supports: There may be reluctance to answer this question if there is an undocumented family member. 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”

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 INCOME SLIDE FOR COMMUNITY HEALTH CENTRES Item that patients/clients are most uncomfortable about answering, trend for women to have higher ‘do not know’. Ask them to approximate. Many Canadians are uncomfortable answering a question about family income so clarify who will have access to this information and how privacy will be protected. There may be many reasons for patients or clients to feel uncomfortable answering this question, including fear of being judged and fear of being reported to Canada Revenue Agency or other authorities. Patients and clients have the right to skip the question/prefer not to answer. # ppl income supports: There may be reluctance to answer this question if there is an undocumented family member. 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”

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) In the case of the Measuring Health Equity project the mandated target is 75%, with each organization type having its own specific requirements. In the case of CHCs, Since all CHCs were already collecting some demographic data, they must meet the target of collecting 1 of the 4 new health equity questions on at least 75% of returning and new clients. The new questions for CHCs are the race/ethnicity question, the disabilities question, the gender question, and the sexual orientation question In the case of Acute Care Hospitals, demographic data collection must be collected on at least 75% of inpatient, day surgery patients and patients in 3 high volume areas. Lastly for Rehab and Complex Continuing Care hospitals, data must be collected on at least 75% of inpatients and outpatient if applicable. Rehab/CCC and Specialty Hospitals Demographic data collection on at least 75% of patients in: Inpatient Outpatient (as applicable)

Who will see the information?
3 key messages to share We are collecting social information from patients /clients to find out who we serve and what unique needs our patients/clients have. We will also use this information to understand patient/client experiences and outcomes. Why? The questions are voluntary and you can choose ‘prefer not to answer’ to any or all questions. This will not affect your care. Voluntary This information will be accessible only to the health care team taking care of you If used in research, information will be combined with data from all other patients/clients and no one will be able to identify any patient/client. Who will see the information? NOTES: Must be included on any written forms by directive of TC LHIN and Ministry of Health Key points to say when introducing the demographic questions: the information gathered is confidential, it will be used only to identify who uses services and used to make service access easier, not answering won’t affect their ability to get health-care services “We are collecting social information from patients/clients to find out who we serve and what unique needs our patients/clients have. We will also use this information to understand patient/client experiences and outcomes. “

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. Collecting demographic information is about sensitively, respectfully asking key questions for the right reasons When asking questions, share that… The questions and methodology is research and evidence-based The questions come from a place of concern, and the data will serve a positive and valuable purpose Their care will not be negatively affected They have the option not to answer English versions: These questions will tell us who our patients are We are collecting information about our patients to help us provide better services and ensure quality care and programming This will take a few minutes. It’s completely voluntary, so you can choose ‘prefer not to answer’ to any of questions.

Critical Steps Staff collects the demographic information
The information collected SHOULD be entered the day it is collected. The information provided by the report is translated into actionable information (i.e. entered somewhere that reception staff can easily access).

Sample Workflow – Interview based collection
1. Staff asks the questions 2. Client provides demographic information 3. Staff enters data Introduce questions Staff addresses client questions & comments Staff uses data codes Present sample workflow of interview based collection Explain process steps first Then explain the staff interactions that are ideal at each step of the process Ask group: Why is this not working at your CHC? What are the places that it breaks down? What’s happening in practice? Work Sheet with steps and then possible impact on data quality and steps to address it Working through challenges together Have big picture to present At each stage, what impacts data quality? Who would you talk to? What resources are needed?

Sample Workflow – Paper based Collection
1. Staff hands out forms 2. Client fills out form 3. Staff receives form 4. Staff checks form 5. Staff enters data Introduce questions Opportunity to ask questions Follow up with client on missing data Present sample workflow of paper based collection Explain process steps first Then explain the staff interactions that are ideal at each step of the process Ask group: Why is this not working at your CHC? What are the places that it breaks down? What’s happening in practice? Work Sheet with steps and then possible impact on data quality and steps to address it Working through challenges together Have big picture to present At each stage, what impacts data quality? Who would you talk to? What resources are needed?

Important points to remember
If a client is unable to respond questions, collect from companion on behalf of the client when possible. If they do not want to answer the questions on the patient’s behalf, bypass the questions. Do not bypass if the client looked at the questions, understood what is being asked, and refuses to participate. Select Prefer Not to Answer for every question. If the client speaks a different language, use one of the 11 translated question forms.

Important points to remember cont. Hospitals
For youth 18 or younger, use Toronto Central LHIN Pediatric guidelines Do not bypass if the client looked at the questions, understood what is being asked, and refuses to participate. Select Prefer Not to Answer for every question. If the client speaks a different language, use one of the 11 translated question forms.

Important points to remember cont. CHCs
For youth 18 or younger, use Toronto Central LHIN Children & Youth guidelines Do not bypass if the client looked at the questions, understood what is being asked, and refuses to participate. Select Prefer Not to Answer for every question. If the client speaks a different language, use one of the 11 translated question forms.

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 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 In order to use the collected data and answer any questions, we need to ensure that we have the best data possible. And we can only ensure this by looking at data quality. Which in essence, is an assessment or examination of the data we have, in order to see whether we can use this data for its intended purpose or goal in a given context. If we don’t look at data quality and our data turns out to be bad data then either two things happens We either don’t use the data. Defeating the whole purpose of collecting it OR We use this bad data which creates a distorted image of our health care organizations and our patient or client population. Which would lead to bad decision making, missed inequities and opportunities for improvement, unreliable baseline and so forth. 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,

Data Quality Indicators
Participation Rate – ≥75% - Missing Data Rate - Prefer Not to Answer Rate - Do not Know Rate Feedback from staff collecting data and clients – < 10% To assess at data quality, we must look at the following three indicators.

Data Quality There are no ‘wrong’ responses
Missing data should be as close to 0% as possible Addressing patient questions is key to good data Enter data word for word as provided by the patient. Differentiate between Do Not Know and Prefer Not to Answer self-identification is key so there are no ‘wrong’ responses (bring up issue of assumptions we make) Missing data is uninterpretable. When it exceeds 10%, the dataset is considered compromised We cannot make any assumption about what missing means so we should always leave it open Reliable and trustworthy means valid data- e.g. of ‘year of arrival’ or ‘disability’ (i.e. not being a diagnosis) Enter data verbatim, don’t correct what you assume are typos. From data entry perspective, there should be no reinterpretation of what the patient is writing. Not interpreting or evaluating the responses also means that you cannot move data around even if a response corresponds to a pre-existing category (e.g. if a patient writes ‘middle eastern’ under ‘other’ it needs to stay there even that that’s a pre-existing option) E.g. system requires you to enter year of arrival but patient has no idea. Standard then needs to be developed and staff feedback is the only way to identify this.

Resources and Materials

Staff Training Materials Checklist
Cheat Sheet Cheat sheet on the 3 key messages when introducing the form Instructions on what to say when handing off and receiving back the form Plain Language Glossary Provides plain language definitions of key terms used on the demographic question form More comprehensive glossary in training manual Staff Script Answers to common questions patients may ask Training Manual Demographic Questions with explanations How to respond to questions from patients Anticipated use of data for care, planning and quality FAQs Glossary of Terms

Patient Information Checklist
Demographic Questions Standardized form Available in English, French, Arabic, Chinese, Hungarian, Italian, Korean, Portuguese, Russian, Spanish, Tamil, Vietnamese Brochure Help patients understand why we ask the demographic questions Poster A poster for patient engagement around demographic data collection. Plain Language Glossary Provides plain language definitions of key terms used on the demographic question form

Patient Information Checklist
Overview Video Racial/ethnic group (CHCs) Sexual orientation (CHCs) Disability (hospitals) Gender Race & Religion (hospitals) Income Asking the 8 Core Demographic Questions (CHCs) Asking the 8 Core Demographic Questions (Hospitals) Asking the 12 Demographic Questions (Hospitals)

Torontohealthequity.ca

Practice

Asking the 8 Core Demographic Questions - Hospital
SHOW VIDEO “Asking the 8 Core Demographic Questions (Hospitals)” (click url to start video) - other videos available Data collection practices vary in health care organizations based on workflows, patient/client needs, staff roles, etc. However, regardless of how data is collected we are all still expected to introduce patients/clients to the demographic questions This video is an example of how we can introduce this initiative **If no time, only show introduction 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
SHOW VIDEO “Asking the 8 Core Demographic Questions (CHC)” (click url to start video) - other videos available Data collection practices vary in health care organizations based on workflows, patient/client needs, staff roles, etc. However, regardless of how data is collected we are all still expected to introduce patients/clients to the demographic questions This video is an example of how we can introduce this initiative **If no time, only show introduction 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 (See Appendix B for sample scenario for Hospital and CHC) Indicate to participants that they can use the materials in their training manual to assist them. Before session starts, give participants a few minutes to review the manual and tips. These are the: Overview of Demographic Data Collection Questions Brochure Plain language Glossary of Terms Asking Patients/Clients for Demographic Information’ in Participant Manual Instructions: Explain role playing activity Divide into groups of three and handout scenarios Tell participants they will have 10 minutes in total (5 minutes) Tell them they need to switch roles as they move through the practice sessions; for example the patient/client in the first session is the admitting clerk in the second session and the observer in the third session. Let them know that you will be walking around the room to watch the interactions, and that at the end of the activity there will be an opportunity to debrief.

Practice Introducing the form….
We are collecting information to tells us who our patients/clients are The questions are voluntary Your responses will be protected and stored with your health-care information Put up while staff are role playing

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 1. Patients/clients are willing to share this information: Patient/client demographic data collection already occurs in the U.S., Australia and the United Kingdom Evidence from Toronto so directly relevant to our population. Findings from Tri-Hospital Pilot Project – participation rate of 86% TC LHIN hospitals already collecting data have reported little to no challenges with patients/clients 2. Patient/client experiences of discrimination and harassment: 3. Best Practice: Data collection at patient/client registration Fit with ongoing work Data quality Ideal timing (point of entry into CHC) Efficiency: Represents point of capturing as many patients/clients as possible in one position (the less environments data is being collected at, the better) 4. The best predictor of client/patient engagement is data collector approach Data collector comfort and respectful attitude is more powerful than question content Ownership, Confidence, Ability to answer questions Best practice: Opportunity to answer patient/client questions, significantly increases completion rates, and reduces missing data (for items/questions 5. Embed data collection into ongoing practices

Contact Information For more information/support: [insert name of key contact person] Or visit Have staff complete the training evaluation found at the end of the Participant training Manual

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