Social Equity Data in Primary Care: How Best to Collect Data From Hard-to-Reach Populations

Health outcomes are strongly influenced by social, economic, and structural factors; however, routine collection of individual-level sociodemographic and social needs data in primary care remains inconsistent and often fails to capture information from populations experiencing marginalization. Existing data collection approaches, such as self-administered electronic questionnaires or opportunistic in-clinic screening, may underrepresent individuals facing barriers related to income, housing instability, language, disability, or limited access to digital tools. As a result, health systems lack the granular data needed to support equity-oriented care and planning.

Standardized tools for collecting sociodemographic and social needs information have been developed and implemented in some primary care settings, including the Health Equity Questionnaire (HEQ). However, prior implementation has demonstrated differential uptake, with lower participation among patients from underserved or structurally marginalized groups. Reported barriers include limited staff capacity, time constraints, discomfort with sensitive questions, and insufficient support for patients requiring assistance to complete questionnaires.

This study evaluates a community-engaged approach to improving the reach and completeness of sociodemographic data collection in primary care. The intervention introduces a Community Health Surveyor (CHS) role designed to proactively engage patients and support questionnaire completion, with a particular focus on individuals who may be less likely to participate through standard approaches.

The trial uses a parallel-group randomized design to compare usual care data collection practices with an enhanced model that includes CHS support. In usual care, patients are invited to complete the HEQ through existing clinic workflows, including electronic invitations linked to appointment reminders, in-person administration during clinic visits, or optional assistance from a virtual surveyor available by appointment. These approaches rely primarily on patient-initiated participation or time-limited interactions with clinic staff.

In the intervention arm, the CHS supplements usual care by proactively reaching out to patients to invite participation and facilitate questionnaire completion. The CHS is embedded within the clinical team and has experience in community-based health engagement. The role includes multiple contact attempts and flexible modes of administration, including telephone, in-clinic, or community-based completion, depending on patient preference. The CHS provides guided support throughout the questionnaire, including reading questions aloud, clarifying content, and facilitating completion in a manner that is responsive to patient needs. Language interpretation services are available to support participation in languages other than English.

The intervention is designed to address known barriers to participation by increasing accessibility, reducing reliance on digital tools, and providing individualized support from a trained staff member with relevant community experience. By incorporating proactive outreach and flexible delivery, the CHS model aims to improve engagement among patients who are less likely to complete sociodemographic surveys through standard clinic processes.

The study assesses whether this approach improves overall questionnaire completion and enhances representation of patients with unmet social needs or characteristics associated with barriers to care. Findings from this study will inform strategies for integrating equity-oriented data collection into routine primary care practice.

Inclusion criteria

• Adults aged 18 years or older
• Registered patients of participating St. Michael's Hospital Academic Family Health Team (SMHAFHT) primary care sites
• Did not complete the Health Equity Questionnaire atthe time of study identification
• Classified as Hard-to-Reach (HTR), defined as meeting at least one of the following criteria based on electronic medical record (EMR) data: Residence in a lower-income area (priority postal code) or documented housing instability (no fixed address) AND at least one vulnerability indicator, including: No email address on file; Receipt of Ontario Works or Ontario Disability Support Program benefits (based on administrative/billing data within the past 5 years); EMR-identified priority population status, including gender diverse identity, severe mental illness (e.g., schizophrenia or bipolar disorder), or developmental disability

Exclusion criteria

• Age under 18 years
• Prior completion of the Health Equity Questionnaire (HEQ) before eligibility determination
• Not included in the St. Michael's Hospital Academic Family Health Team (SMHAFHT) electronic medical record patient population at the time of eligibility identification