1. EUropean Best Information through Regional Outcomes in Diabetes Managing a diabetes database: using a data dictionary and processing health records Scott Cunningham University of Dundee, Scotland The BIRO Academy 2 nd Residential Course Brussels, 23 rd -25 th January 2011

2. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Introduction Background Defining a European common diabetes dataset Defining a European diabetes data dictionary Processing health records Conclusions

3. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Background BIRO WP2: Core diabetes indicators – clinical review of current evidence Candidate indicators Core indicators Basis for dataset

4. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Background Accurate comparisons of diabetes indicators Standardised data currency – Consistent data storage – Consistent aggregation Data standards – Quality – Relevance – Consistency – Avoid duplication Reduction in costs of data development EUBIROD Common Diabetes Dataset

5. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset “The WP will ensure the definition of a minimum dataset that can be used as a common data reference for the extraction of compatible entities at the international level.” “A coding/decoding mechanism will be identified to translate regional data in entities that can contribute to the definition of a shared information system.” Existing data standards…

6. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

7. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

8. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

9. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset Methodology – Clinical review (BIRO WP2) – Analysis of BIRO partner datasets (7 partners) Scottish Diabetes Dataset DiabCare Umbria AMD data file EUCID project used for validation – Review carried out for EUBIROD 20 partners Common dataset for diabetes – Clinical definitions – International System of units (SI)

10. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

11. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset DiabCare data items do not have clear definitions Forum for Quality System in Diabetes (FQSD) and Scottish definitions available EUBIROD definitions based on understanding of common methods of recording

12. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset Each BIRO Dataset item recorded as a “Parameter” Parameters have a unique reference – Are clearly defined – Have an associated data type – May have a unit of measurement (e.g.kg/m 2 ) – May have an upper or lower boundary – May have a locally defined guideline value – Based on evidence and best practice

13. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset Data items assigned “validity” rating after comparison across datasets – “High” Validity: High Validity items consistent across ≥90% of analysed datasets – “Medium” Validity: consistent across ≥60% and <90% of analysed datasets – “Low” Validity: those which are consistent across <60% of analysed datasets

14. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset 25 High Validity Data Items Identified Basic Patient Information – e.g. Type of Diabetes, Date of Birth, Year of Diagnosis Risk Factors – e.g. Smoking Status Clinical Measurements – e.g. Weight, Height, SBP, DBP, HbA1c, Creatinine Examinations – e.g. Eye Examinations Outcomes – e.g. End Stage Renal Failure

15. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset Clinical profile data – Country – Data Source Type e.g. GP, Hospital Clinic (Diabetes), Regional Register – Name of Clinic – Clinic Denominator (Population) – Geographical Area – Website – Contact details

16. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset

17. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset Already used for data repository design – Cyprus Available and browseable online EUBIROD Dataset: http://www.eubirod.eu/webPortal/?q=en/node/8 http://www.eubirod.eu/webPortal/?q=en/node/8

18. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

19. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

20. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

21. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

22. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Common Diabetes Dataset Standardised European data currency Mandatory items – Unique patient identifier – Diabetes diagnosis – Date of diagnosis – Gender – Outcome dates (approximated or default if necessary) Basis of data dictionary…

23. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary “The WP will create an electronic directory inclusive of concept and data dictionaries for diabetes care and prevention, thereby allowing to dynamically link the clinical knowledge-base to the systematic evaluation of health systems outcomes.”

24. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary Explain ‘data about the data’ Formally document dataset compliance Issues with local data – Local knowledge essential to explain anomalies Local recording methods Data quality criteria XML documentation

25. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary Web application to allow entry of local info Data can be reviewed and updated as local datasets change Explain local deviations from definitions Gain local knowledge Consistent output produced across all partners Validated XML created for each data source

26. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

27. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

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30. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

31. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary Type of diabetes

32. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary

33. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary Data standards evolve: – HbA1c: IFCC measurement (mmol/mol) – Waist circumference – Estimated glomerular filtration rate (eGFR) – Laterality for foot/eye data? – Previous foot ulcer – Additional defined diabetes types LADA, MODY, Pancreatic Pathology, Secondary Diabetes, Drug Induced, etc – New drug therapies Boundary values included to omit anomalies

34. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Diabetes Data Dictionary ParameterLower BoundaryUpper Boundary Date of Birth≥01/01/1900Current Date Date of Diagnosis≥DOBCurrent Date Episode Date≥DOBCurrent Date Cigarettes per day0100 Alcohol Intake060 Weight 5300 Height 0.33 Body Mass Index 0.01100 Systolic Blood Pressure 10400 Diastolic Blood Pressure 10300 HbA1c 2.1525.02 Creatinine 31999 Total Cholesterol 0.0150 HDL 0.015 Triglycerides 0.01100 Average Injections020 LDL0.0115 Commencement of patient activity≥DOBCurrent Date Completion of patient activity≥DOBCurrent Date

35. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Processing Health Records Mappings defined from local datasets to EUBIROD standard – Local controlled vocabularies – Non-standard units of measurement Dataset and data dictionary at core of EUBIROD developments – More later! Case study – Scotland!

36. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Processing Health Records Scottish Care Information – Diabetes Collaboration (SCI-DC) National system for NHS Scotland Began as a research project (DARTS) – Started small and developed First minimum dataset – June 1998 National system status 2002 Full coverage by 2006 – All GP sites and hospital clinics – Specialist services and web data entry Shared electronic record for diabetes

37. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Processing Health Records Extract in standard format Consolidate into common structures Record linkage using unique reference

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39. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

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41. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

42. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Clinical Guidelines

43. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

44. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

45. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Processing Health Records System designed for clinical care Supporting single data entry across systems Secondary data use – Clinical audit – Research and enhancing evidence base – Direct patient access

46. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Tayside – Annual Report 2010 Duration in years as a percentage of diabetes type in Tayside

47. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Scottish Diabetes Survey 2009 Diabetes prevalence in each NHS board

48. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Monitoring for Quality Improvement Scotland’s diabetes prevalence – 2002: 103,835 (2%) – 2009: 228,004 (4.4%) Type 1 diabetes: 13% Type 2 diabetes: 87%

49. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Monitoring for Quality Improvement 2005 – 2007 estimates: diabetes-related admissions account for ~12% of Scotland’s inpatient costs of £2.4bn – £26 million for type 1 diabetes – £275 million for type 2 diabetes One in ten people in hospital have diabetes 60% of people with diabetes admitted as inpatients have been admitted as emergencies 2008: Diabetes UK estimated that diabetes accounted for 10% off all NHS expenditure in UK – £9 billion per year, or £1 million every hour – Double a 2002 Department of Health estimate

50. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Monitoring for Quality Improvement 2009 Scottish Diabetes Survey – 9735 (4.3%) reported as having ever had a foot ulcer – 1132 (0.5%) had a lower limb amputation – Lower limb amputation rates are 15 times higher in people with diabetes than those without – 21471 (9.5%) have a record of a previous MII – 11575 (5.1%) recorded as having had a CVA – 80% of people with diabetes will die from cardiovascular complications

51. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Monitoring for Quality Improvement 2009 Scottish Diabetes Survey – 20.6% had retinopathy present in one or both eyes – 1,824 (0.8%) people with diabetes recorded as blind – Diabetic retinopathy is the leading cause off blindness in people of working age in the UK – 254 (0.9%) off those with type 1 and 872 (0.4%) of those with type 2 diabetes have been recorded as having end stage renal failure – 32.7% overweight (BMI 25-29.9kg/m 2 ) – 51.0% obese (BMI 30kg/m 2 or over) – 19.5% are current smokers

52. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

53. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 EUCID

54. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 EUBIROD

55. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011

56. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Conclusions Data standards improve: – Quality – Relevance – Consistency – Avoid duplication If you measure it, you can improve it! All levels of infrastructure can be reported – Local – National – International

57. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Conclusions We have covered: – Defining a European common diabetes dataset – Defining a European diabetes data dictionary – Processing health records Case study – Scotland Principles can be applied internationally

58. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 References EUBIROD Data Dictionary: http://www.eubirod.eu/webPortal/?q=en/node/8 http://www.eubirod.eu/webPortal/?q=en/node/8 The International System of Units: http://www.bipm.org/en/si/ http://www.bipm.org/en/si/ NHS Scotland Data Dictionary: http://www.datadictionary.scot.nhs.uk/ http://www.datadictionary.scot.nhs.uk/ EUBIROD Data Source Questionnaire: http://questionnaire.eubirod.eu/ http://questionnaire.eubirod.eu/

59. The BIRO Academy 2nd Residential Course Brussels, 23rd-25th January 2011 Questions? Thank you for your attention!