1. In partnership © Association of Public Health Observatories Primary data sources and record linkage Liz Rolfe SWPHO Association of Public Health Observatories © Association of Public Health Observatories

2. In partnership © Association of Public Health Observatories Primary data sources and record linkage Differences between record-level and aggregate data Some examples of primary data (births, deaths, HES) Simple sources of pre-calculated data (Compendium, LHO basket, NeSS) confidentiality Codes and lookups Simple record linkage Specialist data sources (reference and links)

3. In partnership © Association of Public Health Observatories Some data sources for public health Data types 1.person-based 2.Aggregate 3.Combined into complex tools  eg Health Profiles, HPI, etc 4.Codes and lookups

4. In partnership © Association of Public Health Observatories 1 Person-based only available under confidentiality agreements to appropriate organisations Individual records eg –Births –Mortality –HES –A&E attendances May be anonymised –Record linkage increasingly difficult May or may not have NHS number –Confidentiality issues

5. In partnership © Association of Public Health Observatories Common characteristics Each line is one person/episode of care Dates eg birth, death, admission Geographical data eg postcode, LA Appropriate details of COD, Underlying cause of death, place of death, diagnosis, procedure Some socioeconomic data may be inferred –Essential for non-standard analyses

6. In partnership © Association of Public Health Observatories Checklist for using any dataset Accuracy Precision Completeness Timeliness Coverage Accessibility Confidentiality/suppression /disclosure control Does original purpose of collection limit subsequent use Who undertook the collection/collation? How the data have been collected? Appropriate techniques eg standardisation applied? Thanks to Meic Goodyear, Healthknowledge.org.uk

7. In partnership © Association of Public Health Observatories Extract from ONS mortality file Using WHO ICD-10 codes, what did the first patient die of?

8. In partnership © Association of Public Health Observatories Extract from HES

9. In partnership © Association of Public Health Observatories 2 Aggregate data Compendium (NCHOD) LHO Basket of Indicators Neighbourhood Statistics (NeSS) No individual data Rates already calculated Quick for standard queries

10. In partnership © Association of Public Health Observatories Compendium of clinical and health indicators National Centre for Health Outcomes Development primitive – hundreds of Excel spreadsheets Not very user friendly You can now download all the indicators for your authority via the workbench on front page Best collection of data on health and disease – less comprehensive on determinants

11. In partnership © Association of Public Health Observatories Compendium of clinical and health indicators Mortality, but increasingly lifestyle and outcomes Risk factors from Health Survey for England (trend data at SHA level) NCHOD website n ww.nchod.nhs.uk complete and historic data sets www.nchod.nhs.uk public website with small numbers suppressed

12. In partnership © Association of Public Health Observatories Confidentiality Births and deaths (with “original cause of death” only) need not be suppressed since July 2005 All other data No statistics may be published which will reveal personal information In practice this means no numbers under 5 Avoid indirect disclosure differencing eg subtracting males from a total will reveal that the count for females is under 5

13. In partnership © Association of Public Health Observatories Basket of indicators produced by London Health Observatory A wide variety of indicators of the wider determinants of health http://www.lho.org.uk/LHO_Topics/National_Lead_Areas/ Basket_Of_Indicators/BasketData.aspx http://www.lho.org.uk/LHO_Topics/National_Lead_Areas/ Basket_Of_Indicators/BasketData.aspx Excellent metadata

14. In partnership © Association of Public Health Observatories Example of data from London Basket of Indicators

15. In partnership © Association of Public Health Observatories Screengrab of NeSS site

16. In partnership © Association of Public Health Observatories

17. In partnership © Association of Public Health Observatories Codes and lookups Gridlink IMD ICD-10 OPCS What else?

18. In partnership © Association of Public Health Observatories Extract from gridlink file

19. In partnership © Association of Public Health Observatories Index of Multiple Deprivation 2007 Distinct dimensions of deprivation which can be recognised and measured separately. These are experienced by individuals living in an area. People may be counted in one or more of the domains, depending on the number of types of deprivation that they experience.

20. In partnership © Association of Public Health Observatories Domains of Index of Multiple Deprivation 2007

21. In partnership © Association of Public Health Observatories Extract from IMD http://www.communities.gov.uk/communities/neighbourhoodrenewal/deprivation/deprivation07 /

22. In partnership © Association of Public Health Observatories IMD 2007 For every indicator: Rank 1 is the most deprived SOA in England Rank 32,482 the least Ward scores and ranks are calculated (unofficially) Local Authority summaries calculated (officially)

23. In partnership © Association of Public Health Observatories International Classification of Diseases ICD-10 chapters

24. In partnership © Association of Public Health Observatories A Nervous System B Endocrine System and Breast C Eye D Ear ERespiratory Tract FMouth GUpper Digestive Tract HLower Digestive Tract JOther Abdominal Organs - principally Digestive KHeart LArteries and Veins MUrinary NMale Genital Organs PLower Female Genital Tract QUpper Female Genital Tract R Female Genital Tract associated with Pregnancy Childbirth and Puerperium SSkin TSoft Tissue UBones and Joints of Skull and Spine WOther Bones and Joints XMiscellaneous Operations YSubsidiary Classification of Methods of Operation ZSubsidiary Classification of Sites of Operation OPCS – CLASSIFICATION OF SURGICAL OPERATIONS AND PROCEDURES

25. In partnership © Association of Public Health Observatories EXTRACT FROM OPCS

26. In partnership © Association of Public Health Observatories Other disease classifications Read (primary care) SNOMED (Systematic Nomenclature of Medicine) ICF (International Classification of Functioning, Disability and Health) http://www.healthknowledge.org.uk/parta/paper1knowledge/3_healthinformation/3b_ SicknessHealth/3b3.asp

27. In partnership © Association of Public Health Observatories Record linkage – the ideal scenario? birth educationemploymenthousing social services police GPA&Ehospital prescribed drugs area deprivation death

28. In partnership © Association of Public Health Observatories Elementary record linkage If you have a common field in two sets of records you can link records eg NHS number (link HES and mortality records) Postcode (link mortality to gridlink to IMD score for SOA) “fuzzy matching” link combinations of dob/postcode/gender

29. In partnership © Association of Public Health Observatories HES record ID procedure postcode XX1 2XX Gridlink Postcode LSOA XX1 2XX YYYYYYY IMD LSOA IMD score quintile YYYYYY ZZZZZ 5 Admissions numbers Quintile 1 least deprived000000 Quintile 2 000000 Quintile 3 000000 Quintile 4 000000 Quintile 5least deprived000000 population 00000 Rate 000 Principles of record linkage x =

30. In partnership © Association of Public Health Observatories Specialist data sources Many many sources of data (which we can’t cover here) including: Infectious diseases (hpa.org.uk) Cancer - your local cancer registry Prescribing http://www.healthknowledge.org.uk/parta/paper1knowledge/3_healthinfor mation/3b_SicknessHealth/3b6&7.asp Sexual health ( hpa.org.uk and everychildmatters.gov.uk/teenagepregnancy/) Lifestyle (covered elsewhere on the course) Stats 19 – police records of road traffic collisions Populations (http://www. healthknowledge.org.uk/parta/paper1knowledge/3_healthinfo rmation/3a_Populations/3a2.asp)

31. In partnership © Association of Public Health Observatories What you have learned Differences between record-level and aggregate data Some examples of primary data (births, deaths, HES) Simple sources of pre-calculated data (Compendium, LHO basket, NeSS) Confidentiality Codes and lookups Simple record linkage Specialist data sources (reference and links)