Transcript Linking Health Data in Canada

Research Using Linked Health
Databases:
Canada Update
Ministry of Health
8 December 2010
Goals of this talk are:
• To describe use of linked health databases in
NA, esp. BC and Ontario
• Illustrate the kinds of use NZ data could be put
to and possible models
• Discuss appropriate models for linked-data
research management in NZ
Background
• Observational (administrative plus clinical)
data becoming more widely used
• Mostly to study processes and patterns of
care, incl. geographic variations
• Comparative clinical effectiveness becoming a
more important goal
• Especially for pharmaceuticals (Phase IV
studies)
Background, cont.
• Concerns about non-randomisation waning
(e.g., increasing use of propensity score)
• Measured variables used to develop
prediction model for balancing tx and control
groups
• Models can almost always out-predict doctors
Situation in USA
• US $1.1 billion comparative effectiveness
initiative
• Patient-Centered Outcomes Research Institute
• Relies almost exclusively on obs. data incl.
Registries
• Creating ‘registry of registries’ (AHRQ)
Situation in USA, cont.
• Hampered by fragmentation of system and no
national or state health ID numbers, not much
linkage going on yet
• Medicare (for >=65yo’s) is major option (about
40 million enrollees)
• HMOs starting to team up to produce
distributed data networks (increases N)
Situation in Canada
• Canada has been linking health databases
since late 80s (in BC)
• Most provinces have capacity vested in Univs
• BC Linked Health Data Project (LHDP) was
managed at UBC until 2009
• Now still based at UBC but managed by
academic joint venture
• Now called Population Data BC
Population Data BC has data from
• BC Vital Statistics
• Ministry of Health Services (Pharmacare but
not Pharmanet)
• WorkSafe BC (injury files)
• Early Development Instrument Data
BC Health Data
• Medical Services Plan Payment Information
(MSP) – NZ does not have this kind of data
• Pharmacare – only all-rx system in Canada
• Discharge Abstract Database (Hospital
Separations)
• Home and Community Care (Continuing Care)
• Mental Health
• BC Cancer Agency including stage info
Research and “Right to Know”
“In celebrating the significance of the public’s
legal right of access to information, we often
overlook the importance of access to
information for research purposes. . . .
“Population Data BC at the University of British
Columbia has built a data base that facilitates
valuable research . . .
RRK (cont.)
“This brief survey demonstrates the benefits of
ensuring the availability of information held
by public bodies for researchers. As we
celebrate Right to Know Week in British
Columbia and Canada, we can appreciate the
broad range of political, economic, social and
cultural benefits that access to information
promotes and to remain vigilant to ensure
that they continue. “ (OIPC, 13 Sept 2010).
Recent Pop Data BC projects
• use of antidepressants by expectant mothers
and their effects on newborn babies
• health costs of treating workplace asbestosinduced illnesses
• educational and social benefits of full-day
kindergarten
• social and economic benefits of reducing early
childhood vulnerability
Getting value out of ICES:
Linked data network for Research, Policy Evaluation
and Decision Support
David Henry, MBChB, MRCP, FRCP
CEO
Long term investment by
MOHLTC
MOHLTC has supported Institute for Clinical Evaluative Sciences (ICES)
since 1992. (www.ices.on.ca)
We use large linked health data-sets (that go back to 1990) to:
– Measure usage, appropriateness and outcomes of health care
interventions
– Provide sophisticated decision support for key Ontario healthcare
organizations
– Study the social economic and environmental determinants of health
– Perform ‘arm’s length’ evaluations of health policies
– Conduct pragmatic trials and other intervention studies
• Our interest is in supporting MOHLTC in getting more value from these
data
The History of ICES
• Established in 1992 as an independent non-profit corporation with
a Board of Directors
– Prescribed entity under Ontario privacy legislation (PHIPA)
• Holds and links (most) important health data-sets in Ontario (13.07
m)
• Collaborate with multiple partners: Ministry, LHINs, CCO, CCN,
OAHPP, OHQC, CIHI, etc.
• Core funding from MOHLTC since 1992 – about 1/3 of total funds:
supports infrastructure: high fixed costs to maintain privacy and
security
• Independent, credible and influential – 120 senior clinical
researchers from around Ontario
Concept of a health superrepository
• A single major repository with high levels of privacy
and security, approved by the IPC
• Administrative health records, clinical registry, vital
statistics, ethno-cultural identifiers, social services,
corrections, education, transport data etc – all linked at
the level of the individual
• High level methodological/ statistical skills: enabling
inferences about cause and effect
• Linked de-identified data sets available to analysts and
researchers in ICES expansion sites across the Province
Examples of ICES Research
(>300 published reports in 2009)
Health system structures
– Defining the LHIN boundaries
– Variation in quality metrics by institution/LHIN
– Impact of alternate payment plans for physicians on access to
care
– Impact of socioeconomic status on access to preventive/
treatment services
– Effects of built environment on rates of type 2 diabetes
Clinical effectiveness
– Adverse cardiovascular effects of Cox-2 inhibitors
– Deaths from new opiate medications
– Comparative effectiveness of drug eluting and bare metal
coronary stents
– Characteristics of tumors missed at colonoscopy
– Do the rates of appropriate firing of implantable cardiac
defibrillators vary according to LV function?
Capabilities of ICES: mapping diabetes to aid urban
planning and health service delivery
ICES
• Efficient– highly productive – >1 published
article in peer-reviewed journal per week
• Privacy issues – Privacy Impact Statements;
probability of reID; small cell withholds
• Security – high level of keyed security
• Expedited ethics approvals with retrospective
reviews based on agreed template
Table Example
ICES – Top Ten Areas of Research
1994-2010
HEALTH SYSTEM MEASUREMENT
ACCOUNTABILITY AND PLANNING
– ICES Practice Atlases:, Edition 1, 1994, and
Edition 2, 1996 and the ICES Cardiovascular
Atlas. 1999 These had profound effects: They set
the stage for public reporting and accountability in
Ontario. They also identified the decline in length
of stay in Ontario, identified the temporal changes
in treatment modalities that drove this and
recommended appropriate hospital closures and
consolidations. This was an important factor in
what became the largest hospital restructuring in
Canadian history, beginning in 1996.
•
Health system (cont.)
• The impact of hospital report cards: The EFFECT
Trial : ICES piloted the original work on hospital
report cards in Ontario. This led to the program now
implemented by the Cardiac Care Network. In 2009
ICES scientists published the world’s first randomized
controlled trial of hospital report cards This showed
that this form of feedback stimulated some
important changes in delivery of care and led to an
overall reduction in mortality after heart attack and
heart failure
HEALTH SYSTEM FUNDING
– Alternate Payment Plans for Physicians: This work
was the first to show the differential impact of
different payments plans for primary care
physicians in Ontario. The change to capitation did
not result in the anticipated benefits
•
Funding (cont.)
– Physician remuneration levels in Ontario:
Ongoing work involving ICES scientists and staff in
the Ministry will provide the first accurate picture
of doctors’ income in Ontario and how this varies
by specialty
•
– Effects of improving access to effective care –
more liberal access to this cardiovascular drug for
patients with cardiac stents significantly reduced
the rates of subsequent cardiac events
PUBLIC HEALTH
• Health of Indigenous Peoples ICES researchers are
working with First Nations and Métis to carry out the
first comprehensive and contemporary analysis of
the health profiles of members of these communities
in Ontario
• Diabetes Atlases: the mapping of diabetes in Toronto
was the first step in a program to use GIS techniques
to identify the determinants of rates of diabetes
across Ontario municipalities. This groundbreaking
work showed the importance of built environment in
determining rates of diabetes
Public health (cont.)
• SARS/influenza : Five policy recommendations from
Toronto's SARS outbreak to improve the safety and
efficacy of restrictions on hospital admissions to
manage infectious disease outbreaks.
• Risk factors for cardiovascular disease: Over a series
of key papers ICES scientists have documented the
varying prevalence of cardiovascular risk factors in
key community groups – eg low SES, landed
immigrants, the young and poor.
APPROPRIATENESS OF CARE
Drug Eluting Stents: This was a pivotal study that
defined the group of patients with coronary
disease who benefit from drug eluting stents and
just as important those who do not. This work was
used as the basis for the restricted coverage policy
currently operating in Ontario.
• Unnecessary prenatal ultrasounds This research
showed the proliferation of prenatal ultrasound tests
including a proliferation of multiple testing, which
was most marked in low risk pregnancies
Appropriateness (cont.)
– Costs of blood glucose test strips to top $500
million in Ontario by 2013: This ICES report
highlighted the huge savings that will result from
curtailing the excessive use of blood glucose
testing strips by individuals with type 2 DM
– Eight out of 10 ambulance transfers between
Ontario healthcare facilities found to be “routine
and non-urgent” This study showed the high level
of inappropriateness of use of the Ontario
ambulance service. Data show that over a threeyear period, inter-facility patient transfers in
Ontario increased by 40 percent
WAIT TIMES/ EQUITY OF ACCESS
– Waiting for coronary artery bypass surgery:
population-based study of 8517 consecutive
patients in Ontario This was one of the early and
key studies of wait times for cardiac procedures
that led to the Ontario wait times strategy.
– Effects of Socioeconomic Status on Access to
Invasive Cardiac Procedures and on Mortality
After Acute Myocardial Infarction. This was one
of the first studies in Canada to show that
availability of cardiac procedures increased with
higher socio-economic status
Wait Times (cont.)
– POWER study: This has shown that access to
treatment services varies little by socioeconomic
status, but the poor and disadvantaged lag in their
capacity to access preventive services
– Better access to MRI: but for whom? This recent
study shows that access to magnetic resonance
imaging has improved over time in Ontario, but
the better off sections of the population have
benefitted most
•
EVALUATION OF HEALTH
TECHNOLOGY
– Systematic review of PET scanning in various
cancers: This study had a huge influence on the
ministry as it formulated its strategy about
funding PET, and funding studies of PET, including
coverage decisions in Ontario
– Implantable Defibrillators: The ICD registry for
Ontario is maintained at ICES and has been used
to conduct studies into the appropriateness of
implantation, rates of firing and the complication
rates after implantation. The latter have been
substantially higher than reported in clinical trials
DRUG SAFETY AND
EFFECTIVENESS
– Outpatient gatifloxacin therapy and dysglycemia
in older adults This is another important clinical
study. - the drug was taken off the
international market within 3 months of
publication of this report.
• Rosiglitazone and cardiac events: Several studies at
ICES have confirmed that cardiac risks are higher
with this drug (Avandia) than with equivalent
medications. These were the first studies to estimate
risk at a community level
Drug Safety (cont.)
– Prescribing of opioid analgesics and related
mortality before and after the introduction of
long-acting oxycodone. This recent work shows a
greater than doubling in the incidence of death
from opiate drugs following the introduction and
widespread marketing of long acting oxycodone.
Many of these deaths appear to have been
accidental
•
Drug Safety (cont.)
– Interaction Study - Clopidogrel/omeprazole: This
study showed that the gastric acid-suppressing
drug omeprazole antagonizes the therapeutic
effects of the anti-thrombotic agent clopidogrel,
leading to an increase in risk of heart attacks. The
research pointed to safer alternatives.
• Interaction Study - Tamoxifen/Paroxetine:
This important study showed that paroxetine
inactivated the anti-cancer properties of
tamoxifen (used in breast cancer) leading to
an increased risk of recurrence and death
Cancer-related ICES studies from
2008 – present
• 1. A population-based study of cardiac
morbidity among Hodgkin lymphoma patients
with pre-existing heart disease
• 2. A population-based study of follow-up care
for Hodgkin lymphoma survivors
• 3. Adoption of adjuvant chemotherapy for
non–small-cell lung cancer: a populationbased outcomes study.
Cancer-related studies (cont.)
• 4. Association between colonoscopy rates and
colorectal cancer mortality
• 5. End of life care for women with gynecologic
cancers
• 6. Factors associated with end-of-life health
service use in patients dying of cancer
• 7. Fracture types and risk factors in men with
prostate cancer on androgen deprivation
therapy: a matched cohort study of 19,079
men
Cancer-related studies (cont.)
• 8. Long-term survival in young adults with
colorectal cancer: a population-based study
• 9. Management of gastric cancer in Ontario
• 10. Population-based longitudinal study of
follow-up care for breast cancer survivors
• 11. Selective serotonin reuptake inhibitors and
breast cancer mortality in women receiving
tamoxifen: a population based cohort study
Cancer-related studies (cont.)
• 12. Using more end-of-life homecare services
is associated with using fewer acute care
services: a population-based cohort study
• 13. Why do patients with cancer visit the
emergency department near the end of life?
• 14. Association of colonoscopy and death
from colorectal cancer: a population-based,
case–control study
Cancer-related studies (cont.)
• 15. Effect of lymph node retrieval rates on the
utilization of adjuvant chemotherapy in stage
II colon cancer
• 16. Factors related to second cancer screening
practice in disease-free cervical cancer
survivors
• 17. Longer wait times increase overall
mortality in patients with bladder cancer
Cancer-related studies (cont.)
• 18. Outcomes of surveillance mammography
after treatment of primary breast cancer: a
population-based case series
• 19. Patterns of care in the initial management
of women with ovarian cancer in Ontario
• 20. Patterns of surgical care for uterine
cancers in Ontario
Cancer-related studies (cont.)
• 21. CT, MRI and ultrasound scanning rates:
evaluation of cancer diagnosis, staging and
surveillance in Ontario
• 22. End-of-life care in lung cancer patients in
Ontario: aggressiveness of care in the
population and a description of hospital
admissions
• 23. Patterns of care for radical prostatectomy
in the United States from 2003 to 2005
Cancer-related studies (cont.)
• 24. Racial composition of hospitals: effects on
surgery for early-stage non-small-cell lung
cancer
• 25. Racial segregation and disparities in breast
cancer care and mortality
• 26. Rates of new or missed colorectal cancer
after barium enema and their risk factors: a
population-based study
Cancer-related studies (cont.)
• 27. Risk of proximal and distal colorectal
cancer following flexible sigmoidoscopy: a
population-based cohort study
• 28. Screening mammography for young
women treated with supradiaphragmatic
radiation for Hodgkin's lymphoma
• 29. Surgery for gallbladder cancer: a
population-based analysis
Cancer-related studies (cont.)
• 30. Surgical outcomes in women with ovarian
cancer
• 31. The impact of diabetes on survival
following breast cancer
• 32. Treating vulvar cancer in the new
millennium: are patients receiving optimal
care?
The Ontario Drug Policy
Research Network:
Generating Evidence to Inform
Policy
Presented by Tara Gomes
The Ontario Drug Policy Research
Network
46
Conflicting Perspectives of Researchers and
Policy-makers
Researchers
Policy Makers
Publication
Promotion
Policy Decisions
Avoid media
Enhance Public Image
Well-Defined
Obscure
Timeliness
Research takes time –
months to years
‘NOW’:
days / weeks
Level of precision
As precise as possible
‘Ballpark’
‘Academic’: relative
risks
‘Pragmatic’: absolute
risks, temporal trends
End-Goal(s)
Research Question
Metrics of Value
47
ODPRN Structure
Drug Utilization, Costs
Policy-driven
Projects
Rapid
Response
Unit (RRU)
Drug Interactions
Drug Safety
Academic
Projects
Adherence
Drug Safety
Ontario Public
Drug Programs
(OPDP)
Cost Effectiveness
Core
Academic
Unit (CAU)
48
RRU Structure
Investigators
•Develop new project ideas
•Policy contact
•Independent Investigator
Rapid
Response
Unit (RRU)
•Policy contact
Program
Leader
•Methodologist/Epidemiologist
•Support external researchers
•Core staff supervisor
•General project oversight
•Analyst
Analyst(s)
Project
Manager
•Extract data and perform
analyses
•Track projects and key metrics
•Privacy/ethics submission
•General Organization/Meetings
49
Five Examples of ODPRN Projects
• Policy Driven Projects:
 Thiazolidinediones and Adverse Cardiovascular Events
 Patterns of Blood Glucose Test Strip Use
 Potentially Inappropriate Opioid Analgesic Utilization
• Academic Projects
 Drug Interaction between PPIs and Clopidogrel
 Macrolide-Induced Digoxin Toxicity
50
Projected costs of blood glucose test strips associated with five scenarios
related to testing frequency, in patients with diabetes aged 65 years and
older, in Ontario, 2009 to 2013
51
Examples of Requested Policy
Projects:
Utilization of PAH Drugs:
– We conducted analyses focusing on the following:
• Patterns of Pulmonary Arterial Hypertension (PAH)
Drug Use in Ontario
• Mortality among people treated with PAH drugs
• Resource Utilization among people treated forPAH
• Spatial clustering of PAH drug prescribing
– Timeliness: Data were analyzed and 3 reports
were provided to the MOH between November
2009 and January 2010 based on discussions.
Time between initial request and first report: 9
business days
Treatment with Erythropoetin
Agents in Cancer Patients:
– We conducted analyses focusing on the following:
• Patterns of New Use of Erythropoietin-Stimulating
Agents: 1997 to 2009
• Variability in Prescribing of ESAs in Regional Cancer
Centres
• Specialty of Physician Prescribing ESAs
• Predicted utilization rates in the next 5 years
– Timeliness: Analyses and 2 reports conducted
between mid-April 2010 and August 2010. Time
from initial request to first report: 21 business
days
•
Urinary Incontinence Drugs
– We conducted analyses focusing on the following:
•
•
•
•
Patterns of UI drug use in Ontario, 1997-2009
2-year Drug Adherence and Dose
Costs of UI drugs in Ontario between 1997 and 2009
Comparative risk of adverse events (tolterodine vs.
oxybutynin) including falls, fractures and delirium
– Timeliness: Analyses and 3 reports completed
between December 2010 and May 2010. Time
between initial request and first report: 42
business days
•
Blood Glucose Test Strips
• We conducted analyses focusing on the
following:
– Summarize SMBG test strip utilization patterns
among elderly Ontarians according to the nature
of their diabetes therapy including costs
– Project costs for SMBG test strips from 2009 to
2013, and cost-savings associated with 5
hypothetical scenarios
– Timeliness: Analyses and 3 reports completed
between March 2009 and April 2009. Time from
initial request to first report: 26 business days
•
Data and code sharing
• Enthusiasm from ICES personnel for NZ effort
• Agreed to share SAS code for standard
analyses (e.g., create cohorts; derive
propensity scores)
• Project-specific code also mostly available
• Would likely be used mostly as heuristic as
would probably need to generate NZ code
• ICES intranet available to all researchers
We and BC have and Ontario doesn’t:
• All publicly funded pharms (Ont only >65)
• Cause of death
• Cancer staging info
BC and Ontario have but we don’t
• Physician billing records with diagnoses
Possible models for ICES-like capability
•
•
•
•
•
•
Within MOH
Within or across universities
Joint venture
Private non-profit charitable trust
Crown corporation (like Pharmac)
‘Revamped’ NHC