1. “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 4 th, 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

2. 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

3. 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)

4. Research Dissemination Policy / / / External / Gate / Keepers / / / / Community Spectrum of Data Processes 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

5. How are Indigenous people involved in data production/use? http://www.onemda.unimelb.edu.au/publications/discpapers.html 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

6. “Fundamental to the exercise of self- determination 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 Data Governance

7. Partnership with Indigenous communities This is the new standard for health research in Canada

8. Action CommunityPolicy Community Partners Research 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

9. 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.

10. http://aboriginalhealthcentre.com/services/our- health-counts/

11. What and How

12. 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)

13. 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.

14. 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

15. 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 self- identification 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'.

16. Specifics of How….. http://www2.stats.govt.nz/domino/external/ web/aboutsnz.nsf/htmldocs/Review+of+th e+Measurement+of+Ethnicity#Reporthttp://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-and- standards/classification-related-stats- standards/ethnicity.aspxhttp://www.stats.govt.nz/surveys_and_met hods/methods/classifications-and- standards/classification-related-stats- standards/ethnicity.aspx

17. 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.

18. 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

19. Questions?