Public opinion on sociodemographic data collection in Ontario healthcare settings KETAN SHANKARDASS, PhD, Research Associate Centre for Research on Inner City Health

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS The need to start measuring and monitoring equity in healthcare settings in Canada Canada’s Chief Public Health Officer has emphasized the importance of tools for equity measurement CIHR has prioritized the development of measurement approaches to health equity Senate Subcommittee on Population Health: “[Action on health equity] must rest on the development of a sound database infrastructure that will ensure the collection, monitoring, analysis and sharing of population health and health disparity indicators [and Canada] lacks strong data at the local level.” In 2009, the Toronto Central Local Health Integration Network (TC- LHIN) required hospitals to begin reporting on equity initiatives.

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS “The ideal approach to measuring equity of care is to link patient-level health data to patient-level sociodemographic data. New data collection and data management systems will be needed to fully assess equity of care in hospital settings.” CRICH 2009

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Why investigate public opinion? Mixed public support for equity-oriented collection of patient-level sociodemographic data in Alberta and British Columbia The disclosure of accurate personal information by health care system users requires public support and compliance The types of data we need to collect reflect sensitive topics There are fundamental implications for patient privacy Public opinion drives political will Organized, effective and acceptable processes of data collection When and how this information is collected has significant implications for the future of data systems, e.g. electronic health records

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Phase 1. Public Opinion Survey We surveyed Ontarians regarding their opinions on the collection of personal information (such as income, education, race/ethnicity, sexual orientation, language) by hospitals “to monitor the quality of the services they provide“ Perceived importance of, and concern over, the collection of personal sociodemographic information by hospitals Public preference for practical approaches to the future collection of such information Telephone interview in November 2009 using random digit dialing in a representative sample of 1,306 Ontarians aged 18 years or over

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Characteristics of study participants were similar to the Ontario general population (Kirst et al, unpublished data)

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Percent disagreement with the statement: “It is important for hospitals to collect information from patients about personal characteristics like ethnic background, family income, and language of preference” (Kirst et al, unpublished data)

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Percent uncomfortable with the collection of information on various patient sociodemographic characteristics by hospital % Uncomfortable (Kirst et al, unpublished data)

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Percent concerned with the statement, “How concerned would you be that the collection of this type of information could negatively affect the care that you or others receive?” (Kirst et al, unpublished data)

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Dot map indicating relatively unfavorable responses about the collection of patient sociodemographic information in hospitals by study participant subgroups 1 (Kirst et al, unpublished data)

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Percent comfortable with various approaches for the collection of sociodemographic information from patients % Comfortable (Kirst et al, unpublished data)

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Phase 2. In-depth Interviews (preliminary analysis/unpublished data)  34 interviews  Young and old  Male, female, transgender  Heterosexual and LBGTQIA  Married and single  Canadian-born and recent/long-term immigrants  Ethnic and cultural backgrounds  Across levels of educational attainment, employment status and type, and household income

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Hesitation about disclosure seemed to be related to three main issues: 3) Lack of trust in how the government would use such information “…a lot of people are, you know, very weary of institutions and government, and you know, all those kind of things…so they’re assuming that it’s going to be (misused)…unless you prove it to me and then I am still going to keep watch.” Problems Most people admit they would (and in some cases have) shared some or all of these data when asked, but still hesitation to share income and education level (followed by sexual orientation and immigrant status) Hesitation about disclosure seemed to be related to three main issues: 1) Concern or shame about feeling pitied, judged or abused given status vis a vis perceived social norms “I think probably people with a lower income are a little bit more weary…a lot of clients and people that I have known who…have been beaten around a bit by the system so they’re a little bit weary even though they are accessing the system and sometimes they’ll feel that (this information) could be used against them” Hesitation about disclosure seemed to be related to three main issues: 2) A lack of understanding of the relevance of data collection - a personal view of health care and a belief in universal coverage “Hmm, I don’t think it’s important (for hospitals to know this information), like I said…we’re all people, we all need care…but if…it is ethnic you know, maybe that doctor does know more about you know, if there’s certain diseases…in that ethnic…background then others...maybe he is better qualified.”

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Solutions If patients understood how (and why) this data was going to be used – measuring and monitoring of health equity at the population level – they would be more prone to disclosure. Need more awareness that health inequities exist 1 in 4 believe that all people in Ontario are equally healthy Almost 1 in 2 don’t think that there are income disparities 8 in 10 think it is important to narrow such differences in health (Quiñonez et al, unpublished data) Those who did recognize the population health perspective tended to have experience with these issues, e.g., social worker, graduate student, therapist, activist, pharmacist

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS CRICH 2009

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS Solutions Those who made the connection during the interview appeared to prefer: Anonymous collection and use; Secure data storage; Collection and storage, update - not asked every time they visit a new health provider Implications for EHRs?