Issues Related to Ethnicity Data Collection in Health Care Settings: A Critical Analysis

To analyze the ethical and other issues related to the collection and use of ethnicity data as a tool for addressing health and health care inequities across population groups.

To analyze the ethical and other issues related to the collection and use of ethnicity data as a tool for addressing health and health care inequities across population groups.

Research Summary

Some BC Health Authorities are considering collecting data on patients’ ethnicity in an effort to:

1. identify gaps in access;
2. identify and address inequities in health outcomes; and
3. tailor services to better meet the needs of diverse groups.

Data that can quantify inequities in access and health outcomes in local jurisdictions are very limited. These issues are of particular concern in relation to Aboriginal people because of poor health outcomes and limited data.

This two year study was designed to critically examine the implications of collecting ethnicity data at the local level through a literature review, interviews with policy-leaders, decision-makers, community leaders, and patients in BC health care settings. In addition to a comprehensive review of international literature, using an ethnographic design, qualitative data were collected from 104 participants from a range of ethnocultural groups including:

• 10 decision-makers and policy leaders,
• 18 community leaders and Health Authority advisors;
• 16 health care staff, and
• 60 patients at an urgent care centre and a community health centre.

Research Results

An interpretive thematic analysis revealed two major findings:

1. Ethnicity as a single variable is of limited effectiveness.
   An ethnicity variable is only meaningful in relation to identifying or addressing health inequities when combined with other markers of inequity such as gender, income level, primary language spoken, educational level, postal code, ethnocultural background, age, etc.
2. There are potential risks associated with ethnicity data collection in a clinical context.
   Although the need to track and mitigate health care inequities is urgent, at an individual level, the majority of patients in this study who were Aboriginal or members of a visible minority group expressed concern about the negative assumptions that might be made about them if asked to identify their ethnicity as part of intake procedures. The individual versus group level harms and benefits of having this data, as well as the appropriate data collection point, will need to be explored further.

These findings point to the need to identify and address the wider issues underlying perceived discrimination in health care settings. Perceived discrimination must be taken seriously and addressed at the system level. To yield the most meaningful information about health status, health care utilization, or access inequities, data pertaining to ethnocultural background should be analyzed in combination with variables such as income level, postal code, primary language spoken, education, gender and age. Potential and perceived harms of collecting these data must be mitigated, particularly for vulnerable populations, by ensuring that data are collected at the least intrusive opportunities possible, and that data collectors receive intensive training. Greatest gains will be made when these data are used to develop organizational strategies for promoting equity, for example, ensuring that adequate interpretation services and culturally appropriate services are available and used, and that structural barriers are identified and eliminated.