establishing a national cardiac surgical database: insights from the uk & europe
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Establishing a national cardiac surgical database: Insights from the UK & Europe. Bruce E Keogh. What is healthcare data used for?. Policy planning Performance assessment Health Authorities Hospitals Specialties Consultants Governance Research Audit Public and patient information. - PowerPoint PPT PresentationTRANSCRIPT
Chinese Association of Cardiovascular Surgeons 2007
Establishing a national cardiac
surgical database:
Insights from the UK & Europe
Bruce E Keogh
Chinese Association of Cardiovascular Surgeons 2007
What is healthcare data used for?
• Policy planning• Performance assessment
– Health Authorities– Hospitals– Specialties– Consultants
• Governance• Research• Audit• Public and patient information
Chinese Association of Cardiovascular Surgeons 2007
The value of national databases
• Benchmarking of national standards– Institutional quality assurance
• Trends in practice– Anticipate financial impact
• Risk models for performance monitoring
• International comparisons
Chinese Association of Cardiovascular Surgeons 2007
Chinese Association of Cardiovascular Surgeons 2007
Cost of CABG related to Mortality Ratio
Chinese Association of Cardiovascular Surgeons 2007
Cardiac Surgical Data Collection in the UK
1975 1980 1985 1990 1995 2000 2005
?
UK Cardiac Surgical Register
UK Heart Valve Registry
Adult Cardiac Database
Central Cardiac Audit Database
Chinese Association of Cardiovascular Surgeons 2007
Cardiac Surgical Data Collection in the UK
1975 1980 1985 1990 1995 2000 2005
?
UK Cardiac Surgical Register
UK Heart Valve Registry
Adult Cardiac Database
Central Cardiac Audit Database
UK Cardiac Surgical RegisterUnit Activity & mortality250 Adult categories200 Congenital categoriesAggregated results returned to units
Chinese Association of Cardiovascular Surgeons 2007
Activity and mortality trends for isolated
coronary surgery (n=386,745)
0
4
8
12
16
20
24
28
Year
Thousa
nds
of oper
atio
ns
0%
1%
2%
3%
4%
5%
6%
7%
Cru
de m
ortality rate
Chinese Association of Cardiovascular Surgeons 2007
Activity and mortality trends for combined heart valve and coronary bypass surgery
0
1
2
3
4
5
Year
Thousa
nds
of oper
atio
ns
7%
9%
11%
13%
15%
17%
Cru
de m
ortality rate
Chinese Association of Cardiovascular Surgeons 2007
Cardiac Surgical Data Collection in the UK
1975 1980 1985 1990 1995 2000 2005
?
UK Cardiac Surgical Register
UK Heart Valve Registry
Adult Cardiac Database
Central Cardiac Audit Database
UK Heart Valve RegistryValve replacements onlyFew patient & valve variablesMortality Tracking
Chinese Association of Cardiovascular Surgeons 2007
Long term survival following valve replacement in the UK
0
10
20
30
40
50
60
70
80
90
100
Years following implant
Su
rviv
al (
%)
Aortic Mitral Tricuspid
UK Heart Valve Registry, 2003
N= 87,343 patients
Chinese Association of Cardiovascular Surgeons 2007
The need for national clinical databases
Malpractice / Clinical Governance
Changing patient profile
JCAHCO / AccreditationBoard Accreditation / CME
United States
Health Care Financing Administration
Raw Data
STS Standards & EthicsCommittee
“Statement of Concern”
Society Driven National database
United Kingdom
Internal MarketPurchaser / Provider
Raw data
SCTS Executive Committee
“Database Project”
Society Driven National database
Chinese Association of Cardiovascular Surgeons 2007
Change in politics
Chinese Association of Cardiovascular Surgeons 2007
Cardiac Surgical Data Collection in the UK
1975 1980 1985 1990 1995 2000 2005
?
UK Cardiac Surgical Register
UK Heart Valve Registry
Adult Cardiac Database
Central Cardiac Audit Database
National Adult Cardiac Surgical DatabaseAll adult cardiac surgery150 data-pointsVoluntary
Chinese Association of Cardiovascular Surgeons 2007
Developing the database: McNamara’s conundrum
President Ford Motor Company (1960)8th US Secretary of Defence (1961-8)President of the World Bank (1968-81)
“Do you make what is measurable importantor…Do you make what is important measurable?”
Chinese Association of Cardiovascular Surgeons 2007
The Measurement of Outcome
• Not easy to measure outcomes for all specialties• No perfect risk algorithm for any intervention or
treatmentInfluenced by:• Differing thresholds of referral / acceptance• Age• Severity of illness• Standard of surgery or intervention• Overall standard of institutional care
– Diagnosis, treatment and clinical management
Chinese Association of Cardiovascular Surgeons 2007
The first step: Define an outcome
• Potential Clinical Outcomes– Mortality– Near miss– Length of stay– Reoperation– Other morbidities
• Best practice– Discharge drugs– Communication
• Simple to measure
• Easily acquired• Easily validated• Understandable• Relevant• Robust
Chinese Association of Cardiovascular Surgeons 2007
The second step: A meaningful dataset
• Clinically relevant, defined dataset– Simple– Adequate contemporary risk stratification– Surveillance– Anticipates change
Chinese Association of Cardiovascular Surgeons 2007
The UK National Adult Cardiac Surgical Database: Minimum Dataset
Patient Data• Demographics• Cardiac history• Co-morbidities• Preoperative
investigations• Preoperative support
Operative Data• Operative priority• Procedure data• Training data
Outcome Data• Complications• Mortality
Chinese Association of Cardiovascular Surgeons 2007
Is more data better?
0.5
0.55
0.6
0.65
0.7
0.75
0.8
RO
C
Most prediction from the first 5-7 variables
Chinese Association of Cardiovascular Surgeons 2007
Risk factor influence changes with time:Evolution of STS Risk Factors
0 1 2 3 4 5 6 7 8
Age>70
Emegency
Ejection fraction
Left main stem disease
Renal impairment
Female Gender
3-vessel disease
COAD
Redo surgery
Cerebrovascular disease
Peripheral vascular disease
Smoking
Hypertension
Ris
k f
act
or
Odds ratio
1980's
2000
Chinese Association of Cardiovascular Surgeons 2007
Risk Stratification Systems
• Some basic variables– Type of operation– Age, Gender, Re-operation, Urgency– Cardiac function, recent MI– Comorbidities: diabetes, hypertension, etc
• Score allocated to each variable• Simple additive systems
– Parsonnet Score, EuroSCORE
• Complex statistical systems– Logistic regression, Bayesian modelling
Chinese Association of Cardiovascular Surgeons 2007
1 2 3 4 5 6
Different risk models use different variables
EJTCVS 2000;17:400-6
AgeLV functionReoperationRenal function
Chinese Association of Cardiovascular Surgeons 2007
Lessons learned from the dataset
• Keep the dataset simple
• Define clear definitions immediately
• Anticipate future changes
• Post-operative complications are difficult to collect well
Chinese Association of Cardiovascular Surgeons 2007
Accuracy of data depends on use
• Professionally credible– Specialty input
• Publicly credible– Independent
Accuracy & reliability
International Institutional Individual
Chinese Association of Cardiovascular Surgeons 2007
Why is Validation Necessary?
Risk factor variation in New York:Before and after report cards
COAD
Unstable angina
Year 1
1.8%
1.9%
Year 2
52.9%
20.8%
Range
1.4 - 61%
0.7 - 61.4%
New York DoH spends 3 years validating data before release
Chinese Association of Cardiovascular Surgeons 2007
The importance of data quality & validation
BMJ Jan 2003
Chinese Association of Cardiovascular Surgeons 2007
Lessons on data quality
• Decide a strategy for data validation– Define local data checking processes for all
participating hospitals– External visits are best, but may be difficult with
data protection laws
Chinese Association of Cardiovascular Surgeons 2007
Fifth National Adult Cardiac Surgical Database ReportSeptember 2004
256 pagesEvolving quality improvement initiativesThe UK Cardiac Surgical RegisterThe UK Heart Valve RegistryThe Cardiac Surgical DatabaseUnit results for CABG & AVRUnit risk factor profilesUnit missing dataIndividual surgeon analyses
Chinese Association of Cardiovascular Surgeons 2007
Chinese Association of Cardiovascular Surgeons 2007
Chinese Association of Cardiovascular Surgeons 2007
Cardiac Surgical Data Collection in the UK
1975 1980 1985 1990 1995 2000 2005
?
UK Cardiac Surgical Register
UK Heart Valve Registry
Adult Cardiac Database
Central Cardiac Audit Database
National Adult Cardiac Surgical DatabaseAll adult cardiac surgery150 data-pointsMandatoryLong term mortality tracking
Chinese Association of Cardiovascular Surgeons 2007
The Central Cardiac Audit Database
National Clinical Audit Support Programme
Harmonised datasetsData collection
ONS
Specialty Disease CCAD Specialty Disease
Adult cardiac CongenitalMINAP AngioplastyAmbulance
Healthcare Commission
Chinese Association of Cardiovascular Surgeons 2007
The Central Cardiac Audit Database
Secure CCAD server
Operating theatres
Hospital clinical database
Dendrite &NICOR at UCL
Encryption & Internet transmission
Office of National Statistics
Reports & research
Chinese Association of Cardiovascular Surgeons 2007
Mortality rates for surgery in the UK
30 days 1 year 5 years
CABG 1.9% 3.9% 11.1%
Valve 3.4% 7.1% 20.1%
CABG + 5.8% 11.5% 24.3%Valve
Other 9.9% 16.3% 28.1%
Chinese Association of Cardiovascular Surgeons 2007
The National Adult Cardiac Surgical Database: Long-term follow up for a single hospital
Chinese Association of Cardiovascular Surgeons 2007
Survival after Isolated Aortic Surgeryin patients aged 80+: Influence of pulmonary disease
No lung disease COPD/emphysema/asthma
Discharge 96.7% 75.7%
1 year 90.6% 69.6%
2 years 88.9% 54.9%
5 years 63.6% 20.0%
Central Cardiac Audit Database: Unpublished data
Chinese Association of Cardiovascular Surgeons 2007
Emerging linkages
Secure CCAD National server
NICOR at University College London
Office of National Statistics
Reports
National NHS administrative data
Commercial databasesMosaic• Social demographics• Financial demographics• Food & purchasing
Chinese Association of Cardiovascular Surgeons 2007
Define a data analysis and access policy
• Where will data be stored?
• Who can have access?
• Who checks quality of analysis?
• Who authorises publication?
All who submit data should have access in some way
Chinese Association of Cardiovascular Surgeons 2007
Data oversight in the UK
Funding & Enforcement
DH Departmentof Health
Central Cardiac Audit Database
ProfessionalStandards & reports
Chinese Association of Cardiovascular Surgeons 2007
National Institute for Clinical Outcomes Research (NICOR)
Principles• To provide Independent analysis of clinical
data• Answerable to:
– Clinical Specialist Associations– Healthcare regulator– Department of Health
• Provision of data to major partners
Chinese Association of Cardiovascular Surgeons 2007
Analytical Support TeamProf Roger BoyleProf Adam TimmisProf Ken TaylorDr John BirkheadMr Ben BridgewaterDr David CunninghamDr John GibbsDr Peter LudmanMr James Roxburgh
CCAD Technical team
Board of Directors
Departmental Head
Project manager
MINAP BCIS SCTS Paediatrics HVR
AnalystsData management
AnalysesReport writing
Support TeamData qualityUsersData managersWorkshopsNewsletters
UCL Senior Lecturer(Statistics)
Ambulance
Health & Social CareInformation Centre
Chinese Association of Cardiovascular Surgeons 2007
Circulation 2005;112:224-31
Chinese Association of Cardiovascular Surgeons 2007
What could we have done better?
• Dataset– Clear definitions from the start– Agreement on how to change the dataset
• Shared ownership of data– Early collaboration with others
• Hospital administration• Health Authority• Regulators
– Integrate with hospital data systems
Chinese Association of Cardiovascular Surgeons 2007
In summary
There will be increasing healthcare regulation with increasing transparency of data.
A national clinical database will facilitate:• Analysis of trends in practice • Benchmarking of national standards
– Institutional and personal
• Risk models for performance monitoring• International comparisons Surgeons & institutions should take the initiative
Chinese Association of Cardiovascular Surgeons 2007
Where to next?
• Additional quality indicators– National Quality Forum– Canadian Consensus Panel– Annals of Thoracic Surgery April 2007
• Linkage to other national data sources
• Documentation of training
• Maintenance of certification
Chinese Association of Cardiovascular Surgeons 2007
Why collect European data?
European Union
Strength in numbers, politically & statistically Strength through shared data Strength through supra national support
Changing clinical practice Increasing national & EU regulation
EACTS Congenital Database ESTS Thoracic Surgery Database EACTS adult cardiac Surgery Database
Chinese Association of Cardiovascular Surgeons 2007
Gathering evidence: What sort of data?
• National demographics – population, age, national SMRs etc.
• How many institutions in each country?
• How many operations in each country?
• Patient data– Demographics– Outcomes
Chinese Association of Cardiovascular Surgeons 2007
Gathering evidence: A meaningful dataset
• Patient Data• Demographics• Cardiac history• Co-morbidities• Preoperative
investigations• Preoperative support
• Operative Data• Operative priority• Procedure data• Training data• Outcome Data• 3 Complications• Survival
Harmonised with STS and UK but smaller
EACTS Adult Cardiac Surgical Database Dataset
Chinese Association of Cardiovascular Surgeons 2007
Process & Methodology:How to collect data across Europe
Hospital direct• Considerable communication• Unclear authority• Ownership unclear
High cost, high risk
Via national associations• Less communication• Clear lines of authority• Nationally owned• Data cleaner• Reproducible model
Low cost, low risk
Chinese Association of Cardiovascular Surgeons 2007
Process & Methodology :The preferred option
Institution
Country(Specialist Association)
EACTS Adult Cardiac
Consultative, Comparative analysis
Direct submission EACTS Congenital Database ESTS Thoracic Surgical Database
Chinese Association of Cardiovascular Surgeons 2007
Reporting
3rd European Adult Cardiac Surgical Database Report Jointly Produced by EACTS / Dendrite
To be published October 2007
As a “Demonstration” Report with data
631,000 patient records
> 250 hospitals
22 countries
> 20 software systems
Distributed free to all EACTS members
Delegates at the 2007 EACTS meeting in Geneva
Available on EACTS website
Chinese Association of Cardiovascular Surgeons 2007
EACTS Adult Cardiac Surgical Database - progress
• STREAM 1 (2002 - 5)– Defined and agreed dataset– Downloading and merging of data– Some analysis– Establish mechanism of joint governance with national
associations• STREAM 2 (2006 - 2010)
– EU funding for EACTS & contributing associations– Validation– Refine analysis & presentation
• STREAM 3– Specific projects
Achiev
ed
Achiev
ed
Chinese Association of Cardiovascular Surgeons 2007
Thank you