1. Hyperglycaemia and diabetes risk among 100,000 patients Opportunities and challenges in using routine healthcare data Dr David McAllister Clinical Lecturer in Epidemiology, University of Edinburgh and Specialty Registrar in Public Health, NHS Fife

2. Focus Permissions to access data Access to data Open data

3. Acknowledgements Alistair McLeod and Paul Ewing at Lothian and Fife SCI- stores Claire MacDonald, Marion Flood and Roma Armstrong at NHS Greater Glasgow and Clyde Safe Haven Christopher Hall and Duncan Heather of Health Informatics Centre David Bailley, Philip Johnston, Janet Murray at NHS ISD Sharon Tuck and Cat Graham at Wellcome Trust CRF Statistics and Epidemiology Collaborators – Katherine Hughes, Nazir Lone, Naveed Sattar, Johnny McKnight and Sarah Wild Chief Scientist Office, Scotland

4. CLINICAL PROBLEM

5. Illness Longitudinal perspective

6. Illness Longitudinal perspective

7. Clinician perspective Illness

8. High blood glucose identified during hospital admission, what follow-up is appropriate?

9. Previous literature specific diseases – coronary disease – stroke – pneumonia small (largest n = 2,000) short duration considerable loss to follow-up

10. Routinely collected data Uncommon outcome Representative sample (population) Range of conditions Answer 2 questions - Distribution of glucose - Incidence of type 2 diabetes

11. Emergency admissions Emergency admissions - SMR01 Scottish Morbidity Record Codes for :- – emergency – specialty – diagnosis Age, sex, deprivation quintile 2004-2010

12. Glucose results – SCI-store Fife Lothian Glasgow … Ayrshire.. Grampian Borders Dumfries … Forth Valley Highland Orkney Shetland Tayside Disseminating clinical results Lab and radiology Independent Commercially supported Emergency admissions - SMR01

13. Diabetes - outcome Emergency admissions - SMR01 SCI- diabetes – 3 year incidence SCI-diabetes Prevalence Incidence to Nov 2011 Fife Lothian Glasgow … Ayrshire.. Grampian Borders Dumfries … Forth Valley Highland Orkney Shetland Tayside

17. PROCESS

18. Approvals Ethics Committee NHS Research and Development Scottish Diabetes Research Network Privacy Advisory Committee at Information Services Division (ISD) Scotland-wide Caldicott Officers (pilot) Glasgow Safe Haven Health Informatics Centre

20. Challenge SCI store data SQL written in Lothian Resources vs costs Maintain clinical service Data governance drift Data not research-ready Emergency admissions - SMR01 SCI- diabetes – 3 year incidence Fife Lothian Glasgow Lanarkshire Tayside

21. DATA SHARING

22. PLOS journals require authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception. PLOS defines the “minimal dataset” to consist of the dataset used to reach the conclusions drawn in the manuscript … to replicate the reported study findings in their entirety

23. Minimal dataset Age (5-year bands) Sex SIMD quintile Glucose (nearest 0.1 mmol/l) Medical/ Surgical COPD, MI, Fracture, Stroke (0 or 1) Diagnosed with type 2 diabetes (0 or 1) Days from discharge to diabetes Year of discharge from hospital

24. http://datashare.is.ed.ac.uk/

25. QUESTIONS Thank-you