1. LINKING THIN to HES – POISONED CHALICE OR HOLY GRAIL? April 2013

2. THIN Data % of UK population6% Total Patients11 million Active patients3.8 Million Average length of follow up >10 years (range 1-27 years) Person Years of Computerisation >77m

3. This document should not be distributed without Cegedim authorization – Copyright 2013 3 | Patient Data Collected Demographics Year of birth, gender, registration dates etc Medical History Event dates, diagnosis, symptoms, risk factors, co-morbidities, referrals… Prescription Rx dates, molecule, dosage, form, duration….. Clinical Data Height, weight, BP, laboratory results, immunisations, life style data…

4. This document should not be distributed without Cegedim authorization – Copyright 2013 4 | Difference between Trusted Third Party model (TTP) and Enhanced Trusted Third Party (eTTP) TTP How? NHS Number + Patid NHS Number + Data id Patid + Data id Patid + Secondary data Data Provider/ Researcher GP Practice Secondary Data Source TTP

5. This document should not be distributed without Cegedim authorization – Copyright 2013 5 | Aim - To ensure that only the minimum personal data required to satisfy a purpose is collected and used and unnecessary information is stripped out. This meets fundamental Data Protection Act 1998 principles as well as Caldicott principles and the Human Rights Act 1998.

6. This document should not be distributed without Cegedim authorization – Copyright 2013 6 | Link using Enhanced Trusted Third Party (eTTP) - Sapior Activate eTTP eTTP key + eTHIN-HES record id eTTP key + eTHIN-HES record id eTTP uploads and matches keys THIN GP Practice THINid + THIN-HES record id THINid + THIN data + HES data NHS Information Centre NHS Number + HES record id NHS Number + HES record id NHS Number + GPpatid eTTP key + eTHINid THIN-HES record id + HES data THIN-HES record id + HES data

7. This document should not be distributed without Cegedim authorization – Copyright 2013 7 | NIGB review - began January 2011.......... completed August 2011 – do not need NIGB approval as not identifiable data Progress?

8. This document should not be distributed without Cegedim authorization – Copyright 2013 8 | Loaded HES to eTTP, invited a sample of practices Activated and collected linked data >70 practices with over 2 million patients + HES data of over 176 million records linked using Sapior's Safemerge service. Quality of link and research issues – academic evaluation Progress?

9. This document should not be distributed without Cegedim authorization – Copyright 2013 9 | Linking existing databases – poisoned chalice or holy grail? Like rare French wine – often expensive and hard to get but resulting data is rich and potent,..... often complex

10. CEGEDIM © copyright 2013 – this document should not be distributed without CEGEDIM authorisation Thank you alison.bourke@cegedim.com