HARMS AND BENEFITS COLLECTING ETHNICITY DATA DAT IN

HARMS AND BENEFITS: COLLECTING ETHNICITY DATA DAT IN A CLINICAL CONTEXT Colleen Varcoe, Annette J. Browne, Sabrina Wong, Victoria L. Smye University of British Columbia, School of Nursing Vancouver, BC, Canada

Research Team From UBC School of Nursing: Annette J. Browne; Victoria L. Smye Colleen Varcoe; Sabrina Wong Koushambhi Khan (Research Manager) Laurel Jebamani (Research Associate) From Vancouver Coastal Health: Nadine Caplette, Manager, Aboriginal Health Services Ron Peters, Director, Health Services Planning Elizabeth Stanger, Regional Coordinator, Language Services, Cross Cultural Health & Diversity

With gratitude to… All research participants Michael Smith Foundation for Health Research

Canadian Context Colonization of Aboriginal people n History of racist/gendered immigration policy n Increasing diversity in the context of globalization and neocolonialism n Neoliberal dismantling of welfare state n “Liberal democratic racism” (Henry et al) n Widening social and health inequities n

Health Care Context n Individualism n Health care reform n Racism and other marginalizing practices in health care n Violence in health care context

n Background n n Health authority wanted to initiate introduction of an “ethnicity” variable in clinical settings (varied motivation) The effects of collecting ethnicity data in a Canadian clinical context are not well known All data on ethnicity in Canada is collected using population-level surveys (e. g. Census, Canadian Community Health Survey); ethnicity data is not routinely collected in health care contexts

Research Question n What are the implications of collecting ethnicity data in a clinical setting?

Ethnographic Design n n Interviews with policy/decision makers Focus group interviews with Ethno-cultural community representatives to Health Authority Interviews with health care workers currently collecting ethnicity data in clinical contexts Observations in two clinical settings: Emergency and community health clinic Patient interviews

Data Collection: Interviews Participants Ethno-cultural community representatives to Health Authority (3 focus groups) Policy/decision makers n 18 Health care workers currently collecting ethnicity data Patients Emergency; Community health clinic 16 10 60

Demographic Characteristics: Patients (n=60) n Age: n Education: 20 -39 years - 24 participants Post Secondary - 22 participants 40 -59 years - 31 participants High School - 15 participants 60 -80 years - 5 participants Grade 10/11 - 15 participants Others - 8 participants n Gender (as identified): n Ethnicity (self-reported): Female 26 participants Aboriginal -22 participants Male 34 participants Euro-CDN -17 participants Other -21 participants 43 English as primary language 37 participants Canadian-born

An ethics lens “discrimination is bad, when it is, because it harms people” n A feminist ethical lens draws attention to morality and power n Harm can be understood as the consequences of circumstances/actions n Certain harms are associated with belonging to specific social groups Lippert-Rassmussen (2006)

Harms and Benefits

Possible Benefits and Good Intentions n Policy/decision makers anticipated group benefits “If we can’t measure disparities in either their health status, access to services, types of treatment prescribed, health outcomes, it is an invisible problem” Decision-maker #6

Some patients anticipated benefits for individuals: “I think it could be an advantage to ask… in terms of treatment for that person because, you know, like things like diet and such and religions and everything are different, okay, so this would be useful for a doctor to know so if you went to an emergency room unconscious then they would know how to proceed’” Patient #21 genetically linked diseases n food preferences n language barriers n

Some patients assumed good purposes “I’m assuming they would use that information for good purposes” Patient #1 “[Asking about ethnicity will convey] that racism is being watched and monitored, and they will be held accountable for any wrongful action…” Patient #44

Anticipation of benefits was contingent on assumed actions “I would readily give away where I am from if that would help the medical team resolve the problem” Patient #55

Patients drew on personal experience to evaluate “I had a couple of doctors that did know native background… he asked me where I was from and automatically he knew what kind of [pause] he asked me these questions, like there’s heart disease and arthritis, and there’s a kind of blood type we get in this area” Patient #31

Patients drew on their personal ethnic identities to evaluate “[There is no benefit to me] because I’m part of the mainstream” Patient #36 “For me specifically it probably won’t benefit me that much, because I was born and raised in Canada, and so I am quite fluent in English” Patient #44 “I am a Canadian white guy, so it doesn’t bother me at all” Patient #35

Patients and community representatives overwhelmingly anticipated harms Harms and Concerns “I would be [offended] if this was asked of me, I think its just another means to divide” Patient #21 “Because its, its not a good question, its not a good question at all, it doesn’t relate to my health, this sort of question, it makes me really angry” Patient #41 “[I have concerns] because of how I’m categorized, how I’m viewed, how I’m judged, right, prejudged” Patient #1

Patients anticipated harms for individuals being asked: n categorization “I feel I’ve been labeled or… classified into a category that I may not agree with… they’re putting me into a category or giving me a certain label or list. ” Patient #1

n stereotyping “if they just want to know if I’m Aboriginal, that would bother me…sometimes they look at natives as if we’re only in here for the drugs and we’re in here to get the attention or whatever” Patient #31

“I’d feel that they don’t have any right to be asking what background I am, they treat me as a patient and the doctors are there to do their job no matter what race you are and I feel extremely highly discriminated towards by asking such a question” Patient #48 n Discrimination

“A lot of us (Aboriginal people) have arthritis, and… are being put down from Tylenol 3’s to Tylenol 2’s, then to regular Tylenol because [the doctors] don’t want to hand it out, they think we are selling them. In other words we have to go out and buy our medications off the street sometimes. ” Patient #31 n Poorer care

Many patients saw ‘class’ as intersecting with ethnicity “He was bleeding all over the place and they just ignored him…you could see he needed more treatment… he was the one that needed the help the most and he was the last one they saw…he looked like a bum off the street so…they put the high class first, like, the ones that look you know, well off” Patient #13

Summary Benefits n Policy decisionmakers and some patients anticipated benefits for groups Harms n Patients and ethnocultural community representatives overwhelmingly feared categorization, discrimination, stereotyping and poorer care for certain individuals and groups (e. g. racialized, stigmatized and/or impoverished persons) n Collecting ethnicity data in clinical settings furthers racializing practices

Conclusion n The potential harms to individuals engendered by collecting ethnicity data in a clinical context are considerable n These practices must be evaluated in the context of increasing politics of fear, racial profiling and growing inequities

Questions n Given population and research evidence of inequities, and lack of evidence of action being taken based on clinically collected ethnicity data, is local ethnicity data necessary to increasing equitable care? n Given the effects of poverty on health, is ethnicity the variable of importance?