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

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.

Potential harms associated with routine collection of patient sociodemographic information: A rapid review

“…Of the 18 studies included in this review, 11 (61.1%) exclusively assessed patients’ perceptions or experiences of the harms associated with the routine collection of sociodemographic data . Four (22.2%) studies exclusively assessed providers’ perceptions of the potential harms for patients from the routine collection of sociodemographic data .…”

“…The included studies were conducted in the USA (66.7%), Canada (27.8%) and the UK (11.1%) . Three studies employed a mixed‐methods design, eight studies used a quantitative design, and the remaining seven used a qualitative design . Three studies included a large variety of racial/ethnic groups including white, black/African American, Latino/Hispanic, Asian and multiracial participants .…”

“…One study included only South Asians . Other studies included the general population and/or health‐care service users . One study (reported in two papers) included a range of participants including community leaders, health‐care workers, health‐care service users and health policy decision makers .…”

“…All 13 studies reporting patients’ perceptions or experiences assessed the harms associated with the collection of race/ethnicity/culture/language data . Three studies assessed the harms associated with the collection of income data, and two studies assessed the harms associated with the collection of religion data . Six studies reported patient perceptions, four reported patient experiences, and three reported both patient perceptions and experiences …”

The Prognostic Significance of c-MET and EGFR Overexpression in Resected Gastric Adenocarcinomas

“…In addition to geographic differences, treatment protocols, tissue processing, surgical approach, and staging protocols vary from region to region, which may affect the prognostic ability of a given receptor. Also, ethnicity, race, and sociodemographic information are not routinely collected in the Canadian medical institutions, although this might change in the future with a strong educational campaign, 83 at least in some provinces. 84 Strengths of the study include exceptionally long followup and prognostic information based on a representatively treated cohort of Canadian GC patients.…”