HARMS AND BENEFITS: HARMS AND BENEFITS: COLLECTING ETHNICITY DATA COLLECTING ETHNICITY DATA

IN A CLINICAL CONTEXTIN A CLINICAL CONTEXTColleen Varcoe, Annette J. Browne, Colleen Varcoe, Annette J. Browne,

Sabrina Wong, Victoria L. Smye Sabrina Wong, Victoria L. Smye University of British Columbia, School of University of British Columbia, School of

NursingNursingVancouver, BC, CanadaVancouver, BC, Canada

Research TeamResearch Team

From UBC School of Nursing: From UBC School of Nursing:

Annette J. Browne; Victoria L. Smye Annette J. Browne; Victoria L. Smye

Colleen Varcoe; Sabrina WongColleen Varcoe; Sabrina Wong

Koushambhi Khan (Research Manager) Koushambhi Khan (Research Manager)

Laurel Jebamani (Research Associate)Laurel Jebamani (Research Associate)

From Vancouver Coastal Health:From Vancouver Coastal Health:

Nadine Caplette, Manager, Aboriginal Health Nadine Caplette, Manager, Aboriginal Health

ServicesServices

Ron Peters, Director, Health Services Planning Ron Peters, Director, Health Services Planning

Elizabeth Stanger, Regional Coordinator, Elizabeth Stanger, Regional Coordinator,

Language Services, Cross Cultural Health & Language Services, Cross Cultural Health &

DiversityDiversity

With gratitude With gratitude to…to…

All research participantsAll research participants

Michael Smith Foundation for Health ResearchMichael Smith Foundation for Health Research

Canadian ContextCanadian Context Colonization of Colonization of

Aboriginal peopleAboriginal people History of History of

racist/gendered racist/gendered immigration policyimmigration policy

Increasing Increasing diversity in the diversity in the context of context of globalization and globalization and neocolonialismneocolonialism

Neoliberal dismantling of welfare stateNeoliberal dismantling of welfare state ““Liberal democratic racism” (Henry et al)Liberal democratic racism” (Henry et al) Widening social and health inequitiesWidening social and health inequities

Health Care ContextHealth Care Context

IndividualismIndividualism Health care reformHealth care reform Racism and other marginalizing Racism and other marginalizing

practices in health carepractices in health care Violence in health care contextViolence in health care context

BackgroundBackground

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 QuestionResearch Question

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

Ethnographic DesignEthnographic Design

Interviews with policy/decision makersInterviews with policy/decision makers Focus group interviews with Ethno-Focus group interviews with Ethno-

cultural community representatives to cultural community representatives to Health Authority Health Authority

Interviews with health care workers Interviews with health care workers currently collecting ethnicity data in currently collecting ethnicity data in clinical contextsclinical contexts

Observations in two clinical settings: Observations in two clinical settings: Emergency and community health clinicEmergency and community health clinic

Patient interviewsPatient interviews

Data Collection: InterviewsData Collection: Interviews

ParticipantsParticipants nn

Ethno-cultural community Ethno-cultural community representatives to Health Authority representatives to Health Authority (3 focus groups)(3 focus groups)

1818

Policy/decision makersPolicy/decision makers 1010

Health care workers currently Health care workers currently collecting ethnicity datacollecting ethnicity data

1616

PatientsPatients

Emergency; Community health clinicEmergency; Community health clinic6060

Demographic Demographic Characteristics: Patients Characteristics: Patients (n=60)(n=60)

AgeAge::20-39 years - 24 participants 20-39 years - 24 participants

40-59 years - 31 participants40-59 years - 31 participants60-80 years - 5 participants60-80 years - 5 participants

GenderGender (as identified): (as identified):Female Female 26 26 participants participants Male Male 34 participants34 participants

EducationEducation::Post Secondary - 22 participantsPost Secondary - 22 participantsHigh School - 15 participantsHigh School - 15 participantsGrade 10/11 - 15 participantsGrade 10/11 - 15 participantsOthers Others - 8 participants - 8 participants

EthnicityEthnicity (self-reported): (self-reported): Aboriginal Aboriginal -22 -22

participantsparticipantsEuro-CDNEuro-CDN -17 -17

participantsparticipantsOtherOther -21 participants-21 participants

43 English as primary language43 English as primary language

37 participants Canadian-born37 participants Canadian-born

An ethics lensAn ethics lens A feminist ethical A feminist ethical

lens draws attention lens draws attention to morality and to morality and powerpower

Harm can be Harm can be understood as the understood as the consequences of consequences of circumstances/actioncircumstances/actionss

Certain harms are Certain harms are associated with associated with belonging to specific belonging to specific social groupssocial groups

““discrimination is discrimination is bad, when it is, bad, when it is, because it because it harmsharms people”people”

Lippert-Rassmussen Lippert-Rassmussen (2006)(2006)

Harms and BenefitsHarms and Benefits

Possible Benefits and Possible Benefits and Good IntentionsGood Intentions

Policy/decision Policy/decision makers makers anticipated anticipated group benefitsgroup benefits

““If we can’t measure If we can’t measure disparities in either disparities in either their health status, their health status, access to services, access to services, types of treatment types of treatment prescribed, health prescribed, health outcomes, it is an outcomes, it is an invisible problem”invisible problem”

Decision-maker #6Decision-maker #6

Some patients anticipated Some patients anticipated benefits for individuals:benefits for individuals:

““I think it could be an advantage I think it could be an advantage to ask… in terms of treatment to ask… in terms of treatment for that person because, you for that person because, you know, like things like diet and know, like things like diet and such and religions and such and religions and everything are different, okay, everything are different, okay, so this would be useful for a so this would be useful for a doctor to know so if you went to doctor to know so if you went to an emergency room an emergency room unconscious then they would unconscious then they would know how to proceedknow how to proceed’”’”

Patient #21Patient #21

genetically genetically linked diseaseslinked diseases

food preferencesfood preferences language language

barriersbarriers

Some patients assumed good Some patients assumed good purposespurposes

““I’m assuming they would use that I’m assuming they would use that information for good purposes”information for good purposes”

Patient #1Patient #1

““[Asking about ethnicity will convey] that [Asking about ethnicity will convey] that racism is being watched and monitored, racism is being watched and monitored, and they will be held accountable for and they will be held accountable for any wrongful action…”any wrongful action…”

Patient #44Patient #44

Anticipation of benefits was Anticipation of benefits was contingent on assumed contingent on assumed actionsactions

““I would readily give away where I I would readily give away where I am from if that would help the am from if that would help the medical team resolve the problem”medical team resolve the problem”

Patient #55Patient #55

Patients drew on personal Patients drew on personal experience to evaluateexperience to evaluate

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

Patient #31Patient #31

Patients drew on their personal Patients drew on their personal ethnic identities to evaluateethnic identities to evaluate

““[[There is no benefit to me] because I’m part of the There is no benefit to me] because I’m part of the mainstream”mainstream”

Patient #36Patient #36

““For me specifically it probably won’t benefit me For me specifically it probably won’t benefit me that much, because I was born and raised in that much, because I was born and raised in Canada, and so I am quite fluent in English”Canada, and so I am quite fluent in English”

Patient #44Patient #44

““I am a Canadian white guy, so it doesn’t bother me I am a Canadian white guy, so it doesn’t bother me at all”at all”

Patient #35 Patient #35

Harms and ConcernsHarms and Concerns

““I would be [offended] if this was asked of me, I I would be [offended] if this was asked of me, I think its just another means to divide”think its just another means to divide”

Patient #21Patient #21

““Because its, its, its not a good question, its not a Because its, its, its not a good question, its not a good question at all, it doesn’t relate to my good question at all, it doesn’t relate to my health, this sort of question, it makes me really health, this sort of question, it makes me really angry”angry”

Patient #41Patient #41

““[I have concerns] [I have concerns] because of how I’m categorized, because of how I’m categorized, how I’m viewed, how I’m judged, right, how I’m viewed, how I’m judged, right, prejudged”prejudged”

Patient #1Patient #1

Patients and community Patients and community representatives representatives overwhelmingly overwhelmingly anticipated harmsanticipated harms

““I feel I’ve been labeled I feel I’ve been labeled or… classified into a or… classified into a category that I may not category that I may not agree with… they’re agree with… they’re putting me into a putting me into a category or giving me a category or giving me a certain label or list.”certain label or list.”

Patient #1Patient #1

categorizatiocategorizationn

Patients anticipated harms Patients anticipated harms for individuals being asked:for individuals being asked:

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

Patient #31Patient #31 stereotypingstereotyping

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

Patient #48Patient #48

DiscriminatioDiscriminationn

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

Patient #31Patient #31

Poorer carePoorer care

Many patients saw ‘class’ as Many patients saw ‘class’ as intersecting with ethnicityintersecting with ethnicity

““He was bleeding all over the He was bleeding all over the place and they just ignored place and they just ignored himhim……you could see he you could see he needed more treatment… needed more treatment… he was the one that he was the one that needed the help the most needed the help the most and he was the last one and he was the last one they saw…he looked like a they saw…he looked like a bum off the street so…they bum off the street so…they put the high class first, like, put the high class first, like, the ones that look you the ones that look you know, well off”know, well off”

Patient #13 Patient #13

SummarySummary

BenefitsBenefits Policy decision-Policy decision-

makers and some makers and some patients patients anticipated anticipated benefits for benefits for groupsgroups

HarmsHarms Patients and ethnocultural Patients and ethnocultural

community representatives community representatives overwhelmingly feared overwhelmingly feared categorization, categorization, discrimination, discrimination, stereotyping and poorer stereotyping and poorer care for certain individuals care for certain individuals and groups (e.g. racialized, and groups (e.g. racialized, stigmatized and/or stigmatized and/or impoverished persons)impoverished persons)

Collecting ethnicity data in Collecting ethnicity data in clinical settings furthers clinical settings furthers racializingracializing practices practices

ConclusionConclusion

The potential harms to individuals The potential harms to individuals engendered by collecting ethnicity engendered by collecting ethnicity data in a clinical context are data in a clinical context are considerableconsiderable

These practices must be evaluated in These practices must be evaluated in the context of increasing politics of the context of increasing politics of fear, racial profiling and growing fear, racial profiling and growing inequitiesinequities

QuestionsQuestions

Given population and research Given population and research evidence of inequities, and lack of evidence of inequities, and lack of evidence of action being taken based evidence of action being taken based on clinically collected ethnicity data, is on clinically collected ethnicity data, is locallocal ethnicity data necessary to ethnicity data necessary to increasing equitable care?increasing equitable care?

Given the effects of poverty on health, Given the effects of poverty on health, is ethnicity the variable of is ethnicity the variable of importance?importance?