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Sociodemographic Data Collection in Healthcare Settings: An Examination of Public Opinions

Lofters, Aisha K. MD*†; Shankardass, Ketan PhD*; Kirst, Maritt PhD‡; Quiñonez, Carlos DMD, PhD*§

Medical Care:
doi: 10.1097/MLR.0b013e3181f81edb
Original Article
Abstract

Background: Federal, provincial, and municipal organizations in Canada have recently begun to promote an equity agenda for their health systems, but much of the necessary data by which to identify those with social disadvantage are not currently collected.

Methods: We conducted a national survey of 1005 Canadian adults to assess the perceived importance of, and concern about, the collection of personal sociodemographic information by hospitals. We also examined public preference for practical approaches to the future collection of such information.

Results: In this sample of Canadian adults, nearly half did not believe it was important for hospitals to collect individual-level sociodemographic data. The majority had concerns that the collection of these data could negatively affect their or others' care; this was especially true among visible minorities and those who have experienced discrimination. There was substantial variation across participant subgroups in their comfort with the collection of various types of information, but greater discomfort in general for current household income, sexual orientation, and education background. There was consistent discomfort reported from older participants. Participants in general were most comfortable providing this type of information to their family physician.

Interpretation: The importance of collecting patient-level equity-relevant data is not widely appreciated in Canada, and our survey has shown that concern about how these data could be misused are high, especially among certain subgroups. Qualitative research to further explore and understand these concerns, patient education about data usage and privacy issues, and using the family doctor's office as a linked electronic data collection point, will likely be important as we move toward high-quality equity measurement.

Author Information

From the *Centre for Research on Inner City Health, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON, Canada; and Departments of †Family and Community Medicine; ‡Ontario Tobacco Research Unit, Dalla Lana School of Public Health, Unviersity of Toronto, ON, Canada; and §Faculty of Dentistry, University of Toronto, ON, Canada.

Supported by the Centre for Research on Inner City Health (CRICH), which is funded by an annual grant from the Ontario Ministry of Health and Long-Term Care (MOHLTC). Supported by a Canadian Institutes For Health Research (CIHR) Doctoral Award (to A.L.); a CIHR Strategic Training Fellowship in the Transdisciplinary Approach to the Health of Marginalized Populations at the time this study was conducted (to A.L., M.K., K.S.).

The opinions, results and conclusions reported in this paper are those of the authors and are independent from the funding sources. No endorsement by CRICH or the Ontario MOHLTC is intended or should be inferred.

Reprints: Aisha K. Lofters, MD, Department of Family & Community Medicine, St. Michael's Hospital, 30 Bond St., Toronto, ON M5B 1W8. E-mail: aisha.lofters@utoronto.ca.

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© 2011 Lippincott Williams & Wilkins, Inc.