Collecting Data on the Social Determinants of Health to Advance Health Equity in Cancer Care in Canada: Patient and Community Perspectives

Despite advances in cancer care, disparities persist. The collection of the social determinants of health (SDOH) is fundamental to addressing disparities. However, SDOH are inconsistently collected in many regions of the world. This two-phase multiple methods study examined patient and community perspectives regarding SDOH data collection in Canada. In phase 1, a survey was administered to patients at a cancer centre (<i>n</i> = 549) to assess perspectives on an SDOH data collection tool. In phase 2, broader perspectives were sought through a community consultation with patient partners experiencing structural inequality (<i>n</i> = 15). Most participants were comfortable with SDOH data collection. Of survey respondents, 95% were comfortable with the collection of language, birthplace, sex, gender, education, and disability, and 82% to 94% were comfortable with SES, sexual orientation, social support, and race/ethnicity. Discomfort levels did not differ across subgroups, except women were more uncomfortable disclosing SES (OR: 2.00; 95%CI: 1.26, 3.19). Most (71%) preferred face-to-face data collection with a healthcare professional and only half were comfortable with storage of SDOH in electronic health records. Open-ended survey responses (<i>n</i> = 1533) and the community consultation revealed concerns about privacy, discrimination, relevance to care, and data accuracy. SDOH data collection efforts should include a clear rationale for patients, training for providers, strong data privacy and security measures, and actionable strategies to address needs.