Managing a diabetes database: using a data dictionary and processing health records

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

2. Introduction • Background • Defining a European common diabetes dataset • Defining a European diabetes data dictionary • Processing health records • Conclusions

3. Background • BIRO WP2: Core diabetes indicators • clinical review of current evidence • Candidate indicators • Core indicators • Basis for dataset

4. 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. 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…

9. 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)

11. 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. 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/m2) • May have an upper or lower boundary • May have a locally defined guideline value • Based on evidence and best practice

13. 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. 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. 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. Common Diabetes Dataset

17. 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

22. 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. 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. 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. 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

31. Diabetes Data Dictionary • Type of diabetes

32. Diabetes Data Dictionary

33. 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. Diabetes Data Dictionary

35. 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. 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. Processing Health Records • Extract in standard format • Consolidate into common structures • Record linkage using unique reference

42. Clinical Guidelines

45. 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. Tayside – Annual Report 2010 • Duration in years as a percentage of diabetes type in Tayside

47. Scottish Diabetes Survey 2009 • Diabetes prevalence in each NHS board

48. 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. 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. 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