1. HEALTH EQUITY DEMOGRAPHIC DATA COLLECTION IN PAEDIATRICS

2. ONE SIZE DOES NOT FIT ALL: THE CASE FOR A PAEDIATRIC HEALTH EQUITY DEMOGRAPHIC DATA COLLECTION TOOL The Tri-Hospital + TPH demographic data collection survey was not tested with a paediatric population. Many of the demographic factors included in the tool are not measureable/relevant throughout infancy to young adulthood (e.g., income, sexual orientation, spoken language). Research has demonstrated that caregiver demographics impact the health status and health care experiences of children and youth.

3. PAEDIARTIC DEMOGRAPHIC DATA COLLECTION TOOL Caregiver Survey About the Caregiver 1.Relationship to the child 2.Canadian-born 3.Spoken language 4.Race/Ethnicity 5.Religion/Spiritual affiliation 6.Disability 7.Gender 8.Sexual Orientation 9.Income that supports the child 10.Number of people supported by income 11.Education 12.Housing Youth Survey 1.Caregiver present at visit 2.Canadian-born 3.Spoken language 4.Race/Ethnicity 5.Religion/Spiritual affiliation 6.Disability 7.Gender 8.Sexual Orientation 9.Housing 10.Primary caregivers’ education 11.Primary caregivers’ employment status About the Child 13.Canadian-born 14.Race/Ethnicity 15.Spoken language 16.Disability 17.Cost of supporting child’s chronic health condition 18.Child’s primary caregivers

4. DATA COLLECTION FROM CAREGIVERS Caregivers are willing to provide their demographic information:  Caregivers report being comfortable with providing demographic data  Caregivers are willing to provide demographic data: Overall, caregiver participation rates were good (71%) Rates varied by method and pilot site [inpatient (IP) vs outpatient (OP)] Paper: Overall (76%); IP (77%); OP (71%) Verbal: Overall (65%); IP (82%); OP (59%) Caregiver response rates were excellent: 89% - 99%; 2 notable exceptions are the year caregiver arrived in Canada (67%) and year child arrived in Canada (61%)

5. DATA COLLECTION FROM CAREGIVERS Why do you need to know my information when my child is the patient? RECOMMENDATION: The rational for collecting caregiver demographics should be clearly communicated when collecting data and in all communication materials.

6. DATA COLLECTION FROM YOUTH MANDATE: Standard age cut off for survey administration - 14 years of age. VS 14 years old 16 years old

7. DATA COLLECTION FROM YOUTH The survey asks personal questions about you, it is your choice whether you share it with your parents. Mom, do you mind sitting in the waiting room while your daughter answers the survey? RECOMMENDATION: Respect youths’ participation in their own care and ensure they have privacy to provide their demographic information.

8. STEPHANIE GEE SENIOR PROJECT MANAGER, RESEARCH & EVALUATION THE HOSPITAL FOR SICK CHILDREN THANK YOU!