1. Chinese Association of Cardiovascular Surgeons 2007 Establishing a national cardiac surgical database: Insights from the UK & Europe Bruce E Keogh

2. 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

3. 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

4. Chinese Association of Cardiovascular Surgeons 2007

5. Cost of CABG related to Mortality Ratio

6. Chinese Association of Cardiovascular Surgeons 2007 Cardiac Surgical Data Collection in the UK 1975198019851990199520002005 ? UK Cardiac Surgical Register UK Heart Valve Registry Adult Cardiac Database Central Cardiac Audit Database

7. Chinese Association of Cardiovascular Surgeons 2007 Cardiac Surgical Data Collection in the UK 1975198019851990199520002005 ? UK Cardiac Surgical Register UK Heart Valve Registry Adult Cardiac Database Central Cardiac Audit Database UK Cardiac Surgical Register Unit Activity & mortality 250 Adult categories 200 Congenital categories Aggregated results returned to units

8. Chinese Association of Cardiovascular Surgeons 2007 Activity and mortality trends for isolated coronary surgery (n=386,745)

9. Chinese Association of Cardiovascular Surgeons 2007 Activity and mortality trends for combined heart valve and coronary bypass surgery

10. Chinese Association of Cardiovascular Surgeons 2007 Cardiac Surgical Data Collection in the UK 1975198019851990199520002005 ? UK Cardiac Surgical Register UK Heart Valve Registry Adult Cardiac Database Central Cardiac Audit Database UK Heart Valve Registry Valve replacements only Few patient & valve variables Mortality Tracking

11. Chinese Association of Cardiovascular Surgeons 2007 Long term survival following valve replacement in the UK UK Heart Valve Registry, 2003 N= 87,343 patients

12. Chinese Association of Cardiovascular Surgeons 2007 The need for national clinical databases Malpractice / Clinical Governance Changing patient profile JCAHCO / Accreditation Board Accreditation / CME United States Health Care Financing Administration Raw Data STS Standards & Ethics Committee “Statement of Concern” Society Driven National database United Kingdom Internal Market Purchaser / Provider Raw data SCTS Executive Committee “Database Project” Society Driven National database

13. Chinese Association of Cardiovascular Surgeons 2007 Change in politics

14. Chinese Association of Cardiovascular Surgeons 2007 Cardiac Surgical Data Collection in the UK 1975198019851990199520002005 ? UK Cardiac Surgical Register UK Heart Valve Registry Adult Cardiac Database Central Cardiac Audit Database National Adult Cardiac Surgical Database All adult cardiac surgery 150 data-points Voluntary

15. Chinese Association of Cardiovascular Surgeons 2007 Developing the database: McNamara’s conundrum President Ford Motor Company (1960) 8 th US Secretary of Defence (1961-8) President of the World Bank (1968-81) “Do you make what is measurable important or… Do you make what is important measurable?”

16. 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 treatment Influenced 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

17. 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

18. Chinese Association of Cardiovascular Surgeons 2007 The second step: A meaningful dataset Clinically relevant, defined dataset –Simple –Adequate contemporary risk stratification –Surveillance –Anticipates change

19. 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

20. Chinese Association of Cardiovascular Surgeons 2007 Is more data better? Most prediction from the first 5-7 variables

21. Chinese Association of Cardiovascular Surgeons 2007 Risk factor influence changes with time: Evolution of STS Risk Factors 012345678 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 Risk factor Odds ratio 1980's 2000

22. 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

23. Chinese Association of Cardiovascular Surgeons 2007 1 2 3 4 5 6 Different risk models use different variables EJTCVS 2000;17:400-6 Age LV function Reoperation Renal function

24. 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

25. Chinese Association of Cardiovascular Surgeons 2007 Accuracy of data depends on use Professionally credible –Specialty input Publicly credible –Independent Accuracy & reliability InternationalInstitutionalIndividual

26. 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

27. Chinese Association of Cardiovascular Surgeons 2007 The importance of data quality & validation BMJ Jan 2003

28. 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

29. Chinese Association of Cardiovascular Surgeons 2007 Fifth National Adult Cardiac Surgical Database Report September 2004 256 pages Evolving quality improvement initiatives The UK Cardiac Surgical Register The UK Heart Valve Registry The Cardiac Surgical Database Unit results for CABG & AVR Unit risk factor profiles Unit missing data Individual surgeon analyses

30. Chinese Association of Cardiovascular Surgeons 2007

32. Cardiac Surgical Data Collection in the UK 1975198019851990199520002005 ? UK Cardiac Surgical Register UK Heart Valve Registry Adult Cardiac Database Central Cardiac Audit Database National Adult Cardiac Surgical Database All adult cardiac surgery 150 data-points Mandatory Long term mortality tracking

33. Chinese Association of Cardiovascular Surgeons 2007 The Central Cardiac Audit Database National Clinical Audit Support Programme Harmonised datasets Data collection ONS SpecialtyDiseaseCCADSpecialtyDisease Adult cardiac CongenitalMINAPAngioplastyAmbulance Healthcare Commission

34. 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

35. Chinese Association of Cardiovascular Surgeons 2007 Mortality rates for surgery in the UK 30 days1 year5 years CABG1.9%3.9%11.1% Valve3.4%7.1%20.1% CABG +5.8%11.5%24.3% Valve Other9.9%16.3%28.1%

36. Chinese Association of Cardiovascular Surgeons 2007 The National Adult Cardiac Surgical Database: Long-term follow up for a single hospital

37. Chinese Association of Cardiovascular Surgeons 2007 Survival after Isolated Aortic Surgery in patients aged 80+: Influence of pulmonary disease No lung diseaseCOPD/emphysema/asthma Discharge96.7%75.7% 1 year90.6%69.6% 2 years88.9%54.9% 5 years63.6%20.0% Central Cardiac Audit Database: Unpublished data

38. 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 databases Mosaic Social demographics Financial demographics Food & purchasing Commercial databases Mosaic Social demographics Financial demographics Food & purchasing

39. 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

40. Chinese Association of Cardiovascular Surgeons 2007 Data oversight in the UK Funding & Enforcement DH Department of Health Central Cardiac Audit Database Professional Standards & reports

41. 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

42. Chinese Association of Cardiovascular Surgeons 2007 Analytical Support Team Prof Roger Boyle Prof Adam Timmis Prof Ken Taylor Dr John Birkhead Mr Ben Bridgewater Dr David Cunningham Dr John Gibbs Dr Peter Ludman Mr James Roxburgh CCAD Technical team CCAD Technical team Board of Directors Departmental Head Project manager MINAPBCISSCTSPaediatricsHVR Analysts Data management Analyses Report writing Analysts Data management Analyses Report writing Support Team Data quality Users Data managers Workshops Newsletters Support Team Data quality Users Data managers Workshops Newsletters UCL Senior Lecturer (Statistics) UCL Senior Lecturer (Statistics) Ambulance Health & Social Care Information Centre Health & Social Care Information Centre

43. Chinese Association of Cardiovascular Surgeons 2007 Circulation 2005;112:224-31

44. 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

45. 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

46. 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

47. 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

48. 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

49. 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

50. 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

51. 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

52. 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

53. 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 Achieved

54. Chinese Association of Cardiovascular Surgeons 2007 Thank you