Collecting accurate and robust equity (CARE) data: An analysis of a pilot quality improvement initiative in ambulatory settings

Background: Social determinants of health (SDoH) influence disease incidence, access to care, experiences, and outcomes. Recognising their importance, researchers and governments have emphasised the need to collect SDoH data in healthcare settings. However, gaps remain in understanding how to collect this information respectfully and equitably. To address these gaps, we aimed to understand local community perspectives on patient-centred SDoH data collection. 

Method: We held a community engagement session to gather input from equity-denied communities on SDoH questions, response options, preferred methods of answering and appropriate data use. Qualitative data were analysed using content analysis, guided by the Capability, Opportunity and Motivation-Behaviour (COM-B) model. We also collected patient feedback from the first six months of implementing patient-centred SDoH data collection in ambulatory services at a large academic health science centre. This feedback was collected through an anonymous Microsoft Forms survey on comfort, safety and ease of responding to the SDoH questions and was summarised using medians and frequencies. 

Results: The community engagement session included 22 participants, including eight patient advisors from diverse community organisations. Participants identified COM-B-related barriers to completing the questionnaire, such as unclear terminology, privacy concerns and mistrust of data use. Facilitators included inclusive language, multiple response methods, and transparency, particularly around data use. After integrating this feedback, the early implementation demonstrated high levels of comfort and safety. Additional feedback from the implementation highlighted opportunities to expand response methods, enhance staff engagement and education and establish ongoing partnerships with patients and communities to support the equitable use of SDoH data. 

Conclusions: Collecting SDoH data in healthcare settings is essential for facilitating equity-informed quality improvement, research, and decision-making. Our project highlights opportunities to overcome barriers by expanding response methods, enhancing staff engagement and education and fostering ongoing partnerships with patients and communities to support equitable SDoH data use and reporting.