Rationale for Questions Used in the Tri-Hospital + Toronto Public Health Equity Data Collection Research Project

Questions, by TopicEvidence for Disparities in Access to Health ServicesEvidence for Disparities in Health OutcomesRationale for Wording and Options Provided
    1. What language would you feel most comfortable speaking in with your health care provider? Check one only.A strong relationship has been found between poor access to primary care and having a first language other than English or French. In particular, women who do not speak English as a first language are less likely to receive preventive services, including breast exams, mammography and pap testing.13Language is a key social determinant of health.4,5
Recent immigrants with prolonged limited English language proficiency are more likely to experience a downward trend in self-reported health and higher rates of unmet health needs.6
Ontarians who do not speak English are more likely to report poor health.3
Limited English proficiency in Canada has been associated with reduced treatment comprehension and compliance, increased risk of adverse drug reactions, and increased likelihood of inadequate management for chronic disease.7
Non-English-speaking patients are less likely to be satisfied with the care received when not speaking the same language as their provider.7,8
The options listed under the questions on language were based on the top 29 languages spoken across Toronto, plus ASL. To be inclusive from an equity perspective, other languages were added representing some of the most common nonofficial mother tongues in Toronto. This was important because certain groups who are fluent in English (and therefore do not request translation services) make up a sizeable group in the GTA (ie, Tagalog in the Filipino community).
    2. How would you rate your ability to speak and understand English? Check one only.
    3. In what language would you prefer to read health care information? Check one only.
Immigration status
    4a. Were you born in Canada?Approximately 25% of immigrants reporting a decline in health (from the time of arrival) experienced barriers to accessing health services.9
Many Canadian newcomers report discrimination on the basis of immigration status as a significant obstacle to accessing primary care.10
New immigrants arrive to Canada with a better health status than Canadian-born persons but experience a reduction in physical and mental health within 2–5 years of settlement, measured not only by self-reported health status but also by physician visits.13
Among immigrant women, stressful resettlement experiences contribute to an increased risk of preterm labor and low-birth-weight infants,14 and cervical cancer is more likely to be detected later than in the general population.15,16
Questions about immigration status can be a source of fear for those residing in Canada without legal status.17 The question was phrased purposefully to not require disclosure of immigration status. This may mitigate fear of reprisal while allowing the assessment of differential health access or health outcomes for those born outside Canada. Asking about time of arrival in Canada allows institutions to identify and potentially anticipate the health decline that many immigrants experience without adding complexity to the question.9
    4b. If no, what year did you arrive in Canada?
    5. In what year were you born?Age clearly influences the use of health services, with older persons typically using more services.18,19Health and quality of life decline as we age, in part related to an increase in the number of chronic diseases.20,21This question was phrased in a simple and direct fashion.
    6. Which of the following best describes your race? Check one only.African-Canadians are underrepresented in voluntary mental health services (eg, outpatient psychiatry clinics and addiction services) but are overrepresented in involuntary services such as medicolegal units in psychiatric hospitals.22
In a study comparing health disparities between Canada and the United States, Canadian women of color were less likely to receive a Pap test in the past 3 years compared with white women.23
The Canadian health system has numerous shortcomings for Aboriginal Canadians who often avoid using mainstream health care because of a lack trust and culturally inappropriate care. Many Aboriginal people therefore delay seeking care and often do not benefit from preventive services.24,25
Racialized groups are more likely to have worse health status than white Canadians after controlling for sex, age, education, immigration status, and income.26,27
Nonwhite persons in Canada are more likely to have a lower perceived quality of care and satisfaction with services received.23
Race is an independent predictor of in-hospital mortality and adverse outcomes for certain conditions.28
Compared with nonaboriginals, urban Aboriginal men and woman in Canada have a significantly shorter life expectancy and are more likely to die prematurely from preventable diseases (including cervical cancer, pneumonia, and influenza), as well as from smoking and alcohol-related causes.29,30
Canadian aboriginals are more likely to receive a cancer diagnosis at a more advanced stage of disease.31
The accuracy of ethnoracial data is enhanced by self-reporting32 as well as the availability of options outside of fixed categories; this is particularly true for persons of multiracial/ethnic backgrounds.33 These are important considerations for health systems data collection; self-identification with a certain subgroup often corresponds with beliefs and patterns of health care utilization that are shared within that subgroup.34,35 However, open-ended questions on “ethnicity” may fail to provide useful information because of response heterogeneity and the inability to collate data. The formulation of this question therefore necessitated a balance between accuracy and utility, and respondents were asked to choose between categories. This pilot question also specifically used the term race as opposed to ethnicity in an effort to avoid the infinite number of ethnic categorizations and enhance data utility.
    7. What is your religious or spiritual affiliation? Check one only.Few Canadian studies have explored faith-based disparities in access to health care. One study from Newfoundland found that Muslim women identified providers' lack of awareness and insensitivity to religious differences as a reason for unmet maternal care needs.36The capacity of health care providers to understand and accommodate a patient's spiritual and religious paradigms can affect routine care24,36,37 and end-of-life care and is increasingly important for patient satisfaction within the health care system.3840Religion is a key social determinant of health.4,5 The major religious denominations of people living in Ontario were included in the survey. To be inclusive from an equity perspective, other major world religions were included, such as Wicca, Zoroastrianism, and Jainism, as well as less common spiritual affiliations.
    8. Do you have any of the following disabilities? Check all that apply.People with disabilities often require greater health care attention because of comorbid conditions that occur with higher frequencies or differ from those faced by the general population; however, there is a trend of service underutilization within this group that is inversely correlated with disability severity.4143
Factors making this population particularly vulnerable to disparities in access (and outcomes) include functional and communication limitations as well as systemic barriers such as inadequate facilities and insufficient training for health care professionals.41,44
There is considerable evidence that certain intellectual disabilities are associated with higher rates of morbidity and shorter life expectancies compared with people without disabilities.4446
The multiplicative effect of overlapping social determinants is shown strongly within this group. For example, Aboriginal people with epilepsy are less likely to see a neurologist but more likely to visit the emergency department or be hospitalized, whereas lower socioeconomic status is associated with poor medication compliance.47
Also, nonwhite people with Down syndrome have a higher mortality rate than white persons with Down syndrome.48
Psychotropic medications are prescribed with a high frequency for people with intellectual disabilities for behavioral or emotional problems; however, incorrect diagnoses often lead to misuse of these drugs, with significant adverse effects for cognition, mobility, and bone and metabolic health.44
All of the options provided under the question on disability were adopted from the OHRC definition of disability.49 OHRC definitions for each type of disability were linked to the question and could be referenced while completing the survey. Acknowledging that often multiple disabilities coexist, participants were prompted to select “all that apply.”
    9. What is your gender? Check one only.Studies focusing on trans and intersex populations have identified stigma and discrimination as limiting access and quality of care.5053
Approximately half (52%) of trans people surveyed reported negative experiences in the emergency department on the basis of their gender, whereas 21% reported avoiding care in the emergency department because of fear of a negative encounter.52
Research focusing on differences in care between the male and female sexes has uncovered inexplicable disparities across all levels of health care after controlling for potentially disease-mitigating factors.3,54,55 For instance, women with coronary syndromes are less likely to be admitted to acute care and receive revascularization procedures compared with men and more likely to die after a critical illness in hospital.56There is a need to separate sex from gender in health research to understand and measure the impacts of gender relations, identity, and sex-linked biology.53 Whereas sex refers to one's biological status, assigned at birth, gender is tied to a person's sense of self. Thus gender identity can be male, female, both, or neither; it differs from sex and is distinct from sexual orientation. Within the survey, “trans” was used an abbreviation and umbrella term to include transgender, transsexual, gender nonconforming, and gender questioning. “Intersexuality” was meant to include those with physical and/or chromosomal variations where features often considered either male or female are combined into one body.57
Gender has been identified by the PHAC as a key social determinant of health.58
Lesbian, gay and bisexual persons
    10. What is your sexual orientation? Check one only.LGB Canadians consistently report more negative experiences within the health system.59,60
When encounters are not overtly discriminatory, LGB patients are treated “just like everybody else,” with inattention to the unique health needs of this population.61,62
Many LGB persons do not divulge sexual orientation for fear of provider bias,63 and experiences of stigma leads to future avoidance or delay of care seeking.59,64
Lesbians are less likely to see a family physician for a Pap test than heterosexual women.64
Canadian LGB youth are at higher risk of suffering from mental illness (including suicidal ideation, suicide attempts, and depression), physical and sexual abuse, homelessness, and exposure to human immunodeficiency virus.65Categories selected for this question were formulated based on consensus among the steering committee, which consisted of multiple health equity experts and researchers.
Once again, the options provided for this question were designed as a balance between inclusivity (creating categories that people can identify with) and the need for utility in measurement and analysis.
    11. What was your total family income before taxes last year? Check one only.Low-income persons have lower access to specialist6670 and primary care compared with high-income persons.71Poverty in Canada is strongly correlated with the chronicity and severity of disease, with poorer treatment outcomes.3,72
Canadians with a very low income experience as much as 9.8 years' difference in their life expectancy compared with the wealthy.73
Low-income Canadians are >2 times as likely to die of conditions for which effective preventive measures and/or treatment options exist, including diabetes, cervical cancer, and suicide.74
Income has been identified by the PHAC as a key social determinant of health (“income and social status”).75 Income brackets were developed in $10,000 increments so that they would be narrow enough to capture the LICOs but broad enough that participants would feel comfortable selecting a category. Asking about the number of dependents supported by the income allows for a more accurate assessment of poverty and its effect on health as LICO vary by family size (ie, LICO in 2009 was $18,421 for an individual but $34,829 for a family of 4).76
    12. How many people does this income support?
Housing status
    13. What type of housing do you live in? Check one only.People who are homeless often feel unwelcomed within the health system and cite discriminatory treatment as a reason for avoidance.77Canada's homeless suffer from higher levels of disease are more likely to die prematurely.78,79
Persons without a fixed address are more likely report poor health status and experience difficulty securing appropriate care.8082
Categories selected for this question were formulated based on consensus among the steering committee, based on an understanding of options available in Toronto. Steering committee members had extensive experience working with patients who were homeless or underhoused.
  • ASL, American Sign Language; GTA, Greater Toronto Area; LGB, lesbian, gay, and bisexual; LICO, low-income cutoff; OHRC, Ontario Human Rights Commission; PHAC, Public Health Agency of Canada.

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