Data on disabilities to support accountability around access to health services: a jurisdictional scan

Data to Enable a Learning Health System
Data collection, Healthcare Interventions, Mental Disability, Patient-Reported Outcomes, Policy, Policy advocacy, Proactive Intervention
February 2023 – June 2023 | Funders: Ministry of Health


Data collection on disability can potentially be utilized to identify patient needs and barriers to care, and inform how healthcare organizations design and deliver services to people with disabilities. However, the extent to which healthcare organizations collect and utilize this data in the first place requires further investigation. This project aims to identify health care organizations in Canada, US, UK, Australia, and New Zealand that

  • Collect data on disabilities in a standardized manner and
  • Use this information to identify inequities, and/or inform the design and delivery of accessible health care services.


Findings will be used to produce a report to provide Canadian policymakers and health care organizations with examples and recommendations on how to utilize disability data collection to improve access to care and quality of care for people with disabilities.


We identified 16 organizations from Canada (4), the US (1), the UK (6), and Australia (5) that had publicly available information on how they collected and used disability data and/or provided us with additional information via call or email.

Data collection occurred through a variety of in-person and remote methods such as questionnaires to collect patient-reported data, physician-completed forms, and retrospective chart reviews. Questions around disability asked about specific diagnoses, care preferences, and/or barriers to care.

The main types of disability data collection and use included:

  1. Patient-reported data for individual care (e.g., patient or family-completed surveys that ask about care preferences and required accommodations, which is connected to their EMR. This data is used to flag patients and alert their clinicians that they have a disability.)
  2. Patient-reported data and chart review for internal, hospital-level changes (e.g., hospital-wide surveys or environmental assessments to identify common physical barriers, or clinic procedures that track the number of patients who have a disability and use their services and use this data for business cases to fund specialists or create funding programs)
  3. Patient-reported data and chart review for external, system-wide initiatives (e.g., research projects or quality improvement initiatives where data is used to develop clinical guidelines)

Best practices for data collection included:

  1. Offering opportunities for self-identification and asking about access needs
  2. Involving patients and clinicians in questionnaire and data entry design
  3. Integrating data collection and use into hospital procedures and EMRs
  4. Creating formal, interprofessional teams in the hospital to focus on advocating for accessible services and supporting patients/families

Team Members