Sociodemographic data collection in healthcare settings: an examination of public opinions

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.