Transcript HARMS AND BENEFITS: COLLECTING ETHNICITY DATA IN A

HARMS AND BENEFITS:
COLLECTING ETHNICITY DATA
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
Colonization of
Aboriginal people
 History of
racist/gendered
immigration policy
 Increasing diversity in
the context of
globalization and
neocolonialism

Canadian Context
Neoliberal dismantling of welfare state
 “Liberal democratic racism” (Henry et al)
 Widening social and health inequities

Health Care Context
Individualism
 Health care reform
 Racism and other marginalizing
practices in health care
 Violence in health care context


Background


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

What are the implications of collecting
ethnicity data in a clinical setting?
Ethnographic Design
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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)

Age:
20-39 years - 24 participants
40-59 years - 31 participants
60-80 years - 5 participants

Education:
Post Secondary - 22 participants
High School
- 15 participants
Grade 10/11
- 15 participants
Others
- 8 participants

Gender (as identified):
Female
26 participants
Male
34 participants

Ethnicity (self-reported):
Aboriginal -22 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”

A feminist ethical lens
draws attention to
morality and power

Harm can be
understood as the
consequences of
circumstances/actions

Certain harms are
associated with
belonging to specific
social groups
Lippert-Rassmussen
(2006)
Harms and Benefits
Possible Benefits and Good
Intentions

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
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genetically linked
diseases
food preferences
language barriers
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, 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:
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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
“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”
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stereotyping
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
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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
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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
 Policy decisionmakers and some
patients anticipated
benefits for groups
Harms
 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)

Collecting ethnicity data in
clinical settings furthers
racializing practices
Conclusion

The potential harms to individuals
engendered by collecting ethnicity data
in a clinical context are considerable
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These practices must be evaluated in
the context of increasing politics of fear,
racial profiling and growing inequities
Questions
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?
 Given the effects of poverty on health,
is ethnicity the variable of importance?
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