Bender Jacqueline L, Tong Eryn, An Ekaterina, Liu Zhihui Amy, Shapiro Gilla K, Avery Jonathan, Chu Alanna, Schulz-Quach Christian, Hales Sarah, Maybee Alies, Sayani Ambreen, Pinto Andrew, Lofters Aisha
Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON M5G 2M9, Canada.
Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5T 3M7, Canada.
Curr Oncol. 2025 Jul 16;32(7):406. doi: 10.3390/curroncol32070406.
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 ( = 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 ( = 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 ( = 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.
尽管癌症治疗取得了进展，但差异仍然存在。收集健康的社会决定因素（SDOH）是解决差异的基础。然而，世界上许多地区对SDOH的收集并不一致。这项两阶段的多方法研究考察了加拿大患者和社区对SDOH数据收集的看法。在第一阶段，对一家癌症中心的患者（n = 549）进行了一项调查，以评估他们对SDOH数据收集工具的看法。在第二阶段，通过与经历结构性不平等的患者伙伴进行社区咨询（n = 15），寻求更广泛的看法。大多数参与者对SDOH数据收集感到满意。在调查受访者中，95%的人对收集语言、出生地、性别、性取向、教育程度和残疾情况感到满意，82%至94%的人对社会经济地位、性取向、社会支持和种族/族裔情况的收集感到满意。各亚组的不适感没有差异，但女性在披露社会经济地位方面更不舒服（比值比：2.00；95%置信区间：1.26，3.19）。大多数人（71%）更喜欢与医疗保健专业人员进行面对面的数据收集，只有一半的人对在电子健康记录中存储SDOH感到满意。开放式调查回复（n = 1533）和社区咨询揭示了对隐私、歧视、与护理的相关性以及数据准确性的担忧。SDOH数据收集工作应包括向患者说明明确的理由、对提供者进行培训、强有力的数据隐私和安全措施以及满足需求的可操作策略。
