Sociodemographic data collection for health equity measurement: a mixed methods study examining public opinions

Maritt Kirst,Sivan Bomze,Carlos Quiñonez,Aisha Lofters,Ketan Shankardass

doi:10.1186/1475-9276-12-75

Abstract

Monitoring inequalities in healthcare is increasingly being recognized as a key first step in providing equitable access to quality care. However, the detailed sociodemographic data that are necessary for monitoring are currently not routinely collected from patients in many jurisdictions. We undertook a mixed methods study to generate a more in-depth understanding of public opinion on the collection of patient sociodemographic information in healthcare settings for equity monitoring purposes in Ontario, Canada. The study included a provincial survey of 1,306 Ontarians, and in-depth interviews with a sample of 34 individuals. Forty percent of survey participants disagreed that it was important for information to be collected in healthcare settings for equity monitoring. While there was a high level of support for the collection of language, a relatively large proportion of survey participants felt uncomfortable disclosing household income (67%), sexual orientation (40%) and educational background (38%). Variation in perceived importance and comfort with the collection of various types of information was observed among different survey participant subgroups. Many in-depth interview participants were also unsure of the importance of the collection of sociodemographic information in healthcare settings and expressed concerns related to potential discrimination and misuse of this information. Study findings highlight that there is considerable concern regarding disclosure of such information in healthcare settings among Ontarians and a lack of awareness of its purpose that may impede future collection of such information. These issues point to the need for increased education for the public on the purpose of sociodemographic data collection as a strategy to address this problem, and the use of data collection strategies that reduce discomfort with disclosure in healthcare settings.

Highlights

Monitoring inequalities in healthcare is increasingly being recognized as a key step in providing equitable access to high quality care [1,2,3,4]
A fundamental step to successfully implementing equity measurement is at the level of political will, and in this regard, public opinion represents an important area of investigation
Sample characteristics The majority of survey participants resided in an urban setting (75%) and 31% were classified as having low socioeconomic position (Table 1)

Summary

Introduction

Monitoring inequalities in healthcare is increasingly being recognized as a key step in providing equitable access to high quality care [1,2,3,4] It is being adopted as an important part of advancing the equity agenda for healthcare systems across jurisdictions [5]. Research in other Canadian jurisdictions (i.e., Calgary, Alberta and British Columbia) has demonstrated general public support for equity-oriented collection of patient-level sociodemographic data [12,13]. One of these studies found that there is concern in some Canadian jurisdictions that the collection of ethnicity data will lead to potential harm for racialized or vulnerable groups in the context of healthcare settings [13]. We recently demonstrated significant under-awareness about incomerelated health inequalities in a sample of Ontarians [14], which may imply less support for the collection of sociodemographic information from patients for purposes of monitoring healthcare inequalities

Methods

Results

Conclusion