Transcript LAUNCHING A PILOT TO COLLECT SOCIO

Launching a Pilot to Collect Socio-Demographic Data
Tri-Hospital Collaborative on Health Equity Data Collection
Ruby Lam
Why Does This Even Matter?
• There is a higher incidence of obesity in the
inner suburbs. Why is this?
• We know poverty and health are associated,
but what is the effect of compounded
disadvantage?
– Are you worse off if you are low-income and
immigrant?
– Low-income and disabled?
Why Does This Even Matter?
• Do the people we serve reflect the people who
live in our catchment area?
• Are care protocols being followed consistently
across all populations?
• Which populations don't walk through our doors
at all? What accounts for this?
• Where should we invest to improve quality of
care?
Great Reasons To Collect Socio-Demographic
Data
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Determine the existence, nature and extent of health
disparities
Know where gaps lie and who they affect
Understand the intersectionality of various forms of
social exclusion on health
Align operations with those most in need
Make informed/evidence-based decisions
Aid in policy development, service planning, and
quality improvement
Improve customer service
Monitor organizational performance
Help meet provincial standards
The Gold Standard For
Measuring Health Equity
• Link patient-level demographic data to
patient-level health outcomes data
• Gathering socio-demographic data is a
necessary first step to closing
health disparities
Our Research Questions
• Which socio-demographic variables should
be collected?
• Who is the best suited to ask patients for
sensitive personal information, and when?
• What formats maximize response rates?
• How best to educate patients and staff
about socio-demographic data collection?
Challenges Of Doing This Work
• Lack of IT interoperability
• Negative association / misunderstanding
about the need to collect demographic
data
• Body of research on socio-demographic
data collection is limited
Environmental Scan
• Interviews with 12 key informants who have
collected socio-demographic client data:
– CAISI (Client Access to Integrated Services and
Information)
– Centre for Addiction and Mental Health –
Problem Gambling Services
– Centre for Addiction and Mental Health –
Rainbow Services
– Center for Health Equity and Social Justice
(Boston)
Environmental Scan
-
Committee for Accessible AIDS Treatment
Dianne Patychuk
Mount Sinai Hospital - Neonatology
South Riverdale Community Health Centre
Thorncliffe Neighbourhood Office / Public
Interest
- Toronto Community Housing Corporation
- Toronto District School Board
- United Way Toronto
Literature Review
• Evidence base of the critical issues,
challenges and promising practices
• 50 articles, 2000 onwards, PubMed and
Google Scholar
Key Findings
You Need to Communicate Transparency and
Clarity of Purpose
• “Collecting demographic data must be rooted in equity
objectives and communicated that way. Everyone is
committed to equity – no one is going to oppose it.”
– Rob Brown –Toronto District School Board
• “By collecting this information we are working to give
you the best possible care on a number of levels.”
– Boston Disparities Project
Key Findings
People are Most Resistant to Answer
Questions about their Income
• “We noticed that people stopped filling
out the form entirely once they came to
the income question.”
– Lisa Kha – South Riverdale Community Health Centre
Key Findings
Sequencing: From Least to Most Sensitive
• “Sequencing is important. You should ask in
the order of least to most sensitive. First ask
the things that you’re born with, then things
that are choices, and lastly things that are
choices that other people might not like.”
– Sean Meagher – Public Interest
Key Findings
There are Different Views about the Usefulness
of ‘Ethnicity’
• “Ethnicity is a swamp….Over time the number
of possible responses could double.”
– Rob Brown – Toronto District School Board
• “Ethnicity is more important than race for
telling us about culture and language.”
– Meghan Patterson – Boston Disparities Project
Key Findings
Race and Ethnicity Should be Self-Identified
• “The response we got from the public about asking
open-ended questions on race and ethnicity was: ‘It’s
about time! Thank you for not telling me who I am and
letting me answer all of who I am.’”
– Rebekah Gowler - Boston Disparities Project
When Should Socio-Demographic Questions be Asked,
By Whom?
• “Registration clerks should ask for basic information
but let clinicians pose the more sensitive questions
during a second interview.”
– Alan Li – Committee for Accessible AIDS Treatment
Key Findings
A critical success factor is helping staff understand the
larger purpose of data collection
• “The most important part of training is helping people
understand why doing this is important, otherwise
their discomfort won’t go away.”
– Sean Meagher – Public Interest
• “Gaming is a big problem – staff will be dishonest or
put down something that’s not true if they don’t
believe in it.”
– Dianne Patychuk
How We Landed
• We are not measuring service equity
• The Canadian context is unique
– Educational attainment
• Balancing best practices with practical
considerations
– 'Race' is not constructed as an open-ended
question
– 'Ethnicity' not asked