“Who is asking and why?
Ethnic identification and health care utilization data –
lessons learned from Indigenous communities”
Measuring Equity: Collecting Patient Demographic Information in TC LHIN Hospitals,
October 4th, 2012
Janet Smylie MD MPH CCFP FCFP
Research Scientist, Centre for Research on Inner City Health,
St. Michael’s Hospital, Toronto
Associate Professor, Dalla Lana School of Public Health, University of
Toronto
Overview – Collecting Ethnicity
Information in Hospitals
• Who and Why
– Engagement and partnership with the
communities whose data is being collected
• What
– Standardization, multiple responses, ethnic
mobility, contextual effects
• How
– Education on how to answer, how to collect,
how to use and understand
– Auditing and undercounting
Why Ethnicity Data Collection Might
be Perceived as Problematic
• Historic and ongoing racial and ethnic
discrimination in hospitals
• Historic and ongoing political marginalization
from governments who are collecting the data
• Historic institutional abuses - Nuu-chah-nulth
First Nation blood studies, Tuskegee syphilis,
HeLa, residential schools
• Historic and ongoing data access issues
(within a context of more general social
exclusion)
Spectrum of Data Processes
Research
/
/
/
External
Dissemination
/ Gate
/
Keepers
Policy
/
/
/
Community
Source: Smylie J., Lofters A., Firestone M., O’Campo P. Population-Based Data and Community
Empowerment. In: Rethinking Social Epidemiology: Towards a Science of Change. O’Campo P., & Dunn
J. (Eds.) New York: Springer, 2011
/
How are Indigenous people
involved in data production/use?
Discussion Paper 18:
Marcia Anderson,
Janet Smylie, Ian
Anderson, Raven
Sinclair & Sue Crengle
'First Nations, Inuit and
Métis Health Indicators
in Canada'
Discussion Paper 17:
Mihi Ratima, Will
Edwards, Sue
Crengle, Janet
Smylie & Ian
Anderson, 'Maori
Health Indicators'
Discussion Paper 16:
Marcia Anderson, Ian
Anderson, Janet Smylie,
Sue Crengle & Mihi
Ratima, 'Measuring the
Health of Aboriginal and
Torres Strait Islander People
http://www.onemda.unimelb.edu.au/publications/discpapers.html
Data Governance
• “Fundamental to the exercise of selfdetermination is the right of peoples to construct
knowledge in accordance with self-determined
definitions of what is real and what is valuable.”
Marlene Brant Castellano
Ethics of Aboriginal Research
Journal of Aboriginal Health, 2004; 1:98-114
Partnership with Indigenous
communities
• This is the new standard for health research in
Canada
Community Partners
Research
Policy
Community
Action
Source: Smylie J., Lofters A., Firestone M., O’Campo P. Population-Based Data and Community
Empowerment. In: Rethinking Social Epidemiology: Towards a Science of Change. O’Campo P., & Dunn
J. (Eds.) New York: Springer, 2011
What’s Not Counted Still
Might Count
• Major issue is that Indigenous identity is inconsistently and
unreliably flagged in the large majority of health care
utilization data systems in Canada
• Addressing this major deficiency in Indigenous health care
utilization databases will require leadership and data
sharing agreements with First Nations, Indian, Inuit and
Métis communities and PTOs.
http://aboriginalhealthcentre.com/services/ourhealth-counts/
What and How
Defining Ethnicity
“Ethnicity is the ethnic group or groups that
people identify with or feel they belong to.
Ethnicity is a measure of cultural affiliation,
as opposed to race, ancestry, nationality or
citizenship. Ethnicity is self perceived and
people can belong to more than one ethnic
group.” (Statistics New Zealand)
Defining Ethnicity
An ethnic group is made up of people who have some or all
of the following characteristics:
• a common proper name
• one or more elements of common culture which
need not be specified, but may include religion,
customs, or language
• unique community of interests, feelings and actions
• a shared sense of common origins or ancestry
• a common geographic origin.
What and How
• What
– Standardization, multiple responses, ethnic
mobility, contextual effects
• How
– Education on how to answer, how to collect,
how to use and understand
– Auditing and relative undercounting of
Indigenous compared to non-Indigenous
groups
Review of the Measurement of Ethnicity
Statistics New Zealand has recently completed a review of the measurement of
ethnicity.
The main findings of the review are:
• the continued need for collection of detailed ethnicity data
• that ethnicity be measured in a consistent way across all official statistics
• that the 2006 Census use the same ethnicity question as that used in the 2001
Census
• that Statistics New Zealand continue to educate respondents, users and producers
of ethnicity data about the concept of ethnicity
• that a comprehensive programme of research into the measurement of ethnicity in
official statistics be completed by the end of 2009
• that all collections of official statistics measuring ethnicity should have the capacity to
record multiple ethnicity responses
• that the method of reporting ethnicity in all collections of official statistics be selfidentification
• that the response 'New Zealander', 'Kiwi' and like responses be separately coded
• the practice of prioritising ethnic group responses to one per individual will be
discontinued'.
Specifics of How…..
• http://www2.stats.govt.nz/domino/external/
web/aboutsnz.nsf/htmldocs/Review+of+th
e+Measurement+of+Ethnicity#Report
• http://www.stats.govt.nz/surveys_and_met
hods/methods/classifications-andstandards/classification-related-statsstandards/ethnicity.aspx
Specifics of How…..
• When collecting ethnicity information, people need to be
able to state their specific ethnic groups without being
forced to identify themselves in a more general category.
Detailed ethnic group information is to be collected in
order to allow categorisation at the most detailed level of
the ethnicity classification, level 4. Data can be
aggregated into a smaller number of categories as users
require.
Overview – Collecting Ethnicity
Information in Hospitals
• Who and Why
– Engagement and partnership with the
communities whose data is being collected
• What
– Standardization, multiple responses, ethnic
mobility, contextual effects
• How
– Education on how to answer, how to collect,
how to use and understand
– Auditing and undercounting
Questions?