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• Moira Kapral
• Challenges and Opportunities in Linking Administrative
Claims Data with Stroke Registry Data
FINANCIAL DISCLOSURE:
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Challenges and opportunities in linking
administrative claims data with registry data:
the Registry of the Canadian Stroke Network
Moira K. Kapral MD, MSc, FRCPC
May 2010
Overview
•
Description of the Registry of the Canadian Stroke Network
(RCSN)
•
Administrative databases available for linkage
•
Linkage process
•
Advantages and disadvantages of linking registry to
administrative data
Ontario, Canada
• Canada's largest
province
• Population 13 million
• Urban and rural
• Ethnically diverse
• Universal health
coverage with single
payer
Ontario Stroke System
•
Regionalized stroke care
•
Designated stroke centres
•
Transfer and bypass protocols
•
Funded by Ministry of Health
•
Part of a nationwide stroke strategy
•
Requirement for measurement of monitoring of the
quality of stroke care delivery
Evaluation of the provincial stroke strategy
• Mandate for reporting regional performance on key stroke
quality indicators
• 23 indicators including
– Thrombolysis
– Neuroimaging
– Stroke unit care
– Carotid imaging
– Antithrombotic therapy
– Risk factor modification
• Need for high-quality clinical database
Registry of the Canadian Stroke Network
• Clinical database founded in 2001
• Patients with acute stroke or transient ischemic attack
admitted to hospital or seen in the ED of acute care
institutions
• Four phases with varying methodology
• Funded by the Canadian Stroke Network
and the Ontario Ministry of Health
and Long-Term Care
• www.rcsn.org
Registry of the CSN
Core Database
EMS
Data
Emergency
Department
Data
Entry Criteria:
• ED diagnosis of stroke/TIA
• onset  2 weeks of hospital visit
Hospital
Admission
Data
Discharge
Administrative Data
-Hospitalizations
-Mortality
-Physician Services
-Provincial Drug Formulary
Data
Data collected
• Demographics
• Pre-hospital/EMS and emergency department care
• Stroke data – type, subtype, severity, scales
• In-hospital interventions, consultations, complications
• Medications – prehospital, during admission, at discharge
• Investigations
• Disposition
Methodology
• laptop computer with custom software for data
entry
• electronic transfer of data to coordinating centre
• web-based module also in use (SPIRIT)
Intelligent Data Entry Improves Data Quality
• only appropriate fields appear (if … then “pop-ups”)
• few text fields (check boxes or choice fields)
• range checks
• logic checks – e.g. only correct sequence allowed
• data completeness checks
• double entry of critical fields
• display of time intervals, age for reality checks
Characteristics of a high quality clinical
database
completeness of recruitment
completeness of data
use of explicit definitions of variables
data validation
Black N, Barker M and Payne M. BMJ 328:1478, 2004
Data Transfer
Institute for Clinical Evaluative Sciences (ICES)
• Established by provincial government to perform research
related to equity, access and quality of health care
• Administrative data housed there by special agreement
• Strict data security measures
RCSN phases 1 and 2: 2001-2003
• 21 stroke centres across Canada
• Consent-based with 6-month follow-up interviews for
functional status and quality of life
• Problems with consent led to biased sample
RCSN “Prescribed” in PHIPA 2004
• The RCSN is one of only four registries in Ontario that
have been granted 'prescription' in the regulations of
the Ministry of Health and Long-Term Care under
s.39(1)(c )of the Personal Health Information Privacy
Act 2004.
• RCSN collects data without consent, “for the purposes
of facilitating or improving the provision of health care”
• RCSN is the primary means of monitoring and
evaluating acute stroke care and outcomes in Ontario
RCSN Phase 3: 2003 onwards
•
DataProvince-wide
collected without
Clinics
consent, “for the purposes of
audit
facilitating
or improving the provision of health care”
Stroke centers
• All patients at 11 Ontario
stroke centres (core RCSN)
– N > 40,000
• Population-based audit (RCSN Ontario Stroke Audit)
– 15-20% of all Ontario stroke cases at all 150
hospitals (n~5,000/year)
• Patients at secondary prevention clinics
Data Security
• laptop computers use finger print readers for
password protection
• data encrypted using BestCrypt ® software
• personal patient information stripped before data
sent to ICES (encrypted health card number sent
separately)
• encrypted data uploaded to ICES by direct
unpublished telephone line
• data kept on a secure server without connections
to Internet or Intranet
• ICES has physical security barriers
• data security and privacy policies
www.ices.on.ca  Investigative Reports
Marked variations in tPA by hospital type,
2002/03 and 2004/05
Regional variation in stroke unit admissions
Overall rate 18.4%
Publications
Why link registry to administrative data?
Rationale for linkage to administrative data
Pre-stroke
conditions,
care, drugs
RCSN
stroke cohort
Characterize
based on
geographic and
area factors
Follow up for readmissions,
medications, deaths
Advantages of linked registry and
administrative data
• Registry creates well-characterized cohort of stroke
patients, with detailed baseline clinical data
• Long-term follow up through administrative data
– Less expensive than clinical follow up
– Minimal loss to follow up
• For evaluation of stroke systems and regionalized care,
permits evaluation of association between interventions
and outcomes (mortality, readmissions, patterns of care)
Administrative data sources in Ontario
Database
Variables
Registered Persons/Vital
Statistics
Mortality
CIHI Discharge Abstract DB
Hospital separations
CIHI National Ambulatory
Care
Emergency department and ambulatory
visits
Drug Benefits Database
Prescription claims for those aged > 65
Canada Census
Area-level income, education
Physician Claims
Outpatient visits, procedures
Population-based, comprehensive, validated
Process for linkages
•
Need unique patient identifier: health card number
•
Considered most sensitive piece of personal health
information – need stringent data security procedures
•
Health card number collected in RCSN database
•
Not transferred with other data; sent on separate disc
to specific data custodian at ICES
•
Scrambled to create a new unique ID number; kept on
a separate server with no connection to Internet in an
area with restricted access
Challenges in using linked data
• Collection of unique patient identifier necessitates
stringent, time-consuming and expensive data security
measures
– Development of protocols and procedures
– Personnel to implement
– Programming and software
– Security of data facility
• Cannot export or share linked dataset
Challenges in using administrative data
• Population-based data sources not always available
• Not all variables of interest available in existing databases
– Functional status, quality of life, laboratory data,
biomarkers, genetic tests
• Coding/miscoding
• Claims may not reflect reality
• Experience required for proper use and interpretation
Conclusions
• Linked registry and administrative data ideal for studying
both processes and outcomes of stroke care
• Should be considered for jurisdictions that are
establishing regionalized systems of stroke care, to allow
evaluation of return on investment
• Main challenges are
– Availability of appropriate databases
– Data security
– Expertise in linkages and analyses
• Worthwhile investment for policy-makers and government
Advertisement for RCSN database
• AVAILABLE TO YOU for research projects
• Analyses done on-site at ICES and funded by RCSN grant
• Need to collaborate with RCSN investigator
• Project request forms available at www.rcsn.org
Thanks and questions