1. Patients and the Web Better NHS services with linked data Frank Sullivan NHSTayside Prof. of R&D in Primary Care Health Informatics Centre Dundee

2. Dundee Edinburgh

3. Outline of talk How are health data linked in Scotland? What services does that enable? Do patients benefit Making access easier Multi-agent systems

4. 64% of adults access the Internet Adults who have used the Internet in the 3 months prior to interview in October 2005 (GB )National Statistics Omnibus Survey 2005

5. How often, if at all, do you personally use the internet?

6. Health Use Internet Have used for this purpose –Health-related information 34% Is there anything which you have personally never used the internet to do but which you would like to? –Get medical information/advice 7% MORI 2005

7. Data, Data everywhere Opticians Hospital SMR GP PAMS Lab Data Pharmacy Eye van Investigations Screening

8. Community Health Number DOB Sex Sex Check 07 10 64 02 5 0 07 10 64 02 5 0 Serial No

9. Linking Data for Seamless CareCHNo Hospital Eye Van Pharmacy Lab Data OpticiansInvestigations Screening PAMS

10. Tayside datasets Social Class Residence type Geographic location GP type Death Age Dispensed Rx Hospitalisations Biochem/haemo Pathology Microbiology Diabetes MCN CVd MCN Respiratory MCN Thyroid MCN Liver MCN Op Clinics Speciality Clinics Primary care Birth Record Growth Record Cardiovascular Risk Ambulance data 1992>>>>>>>>>>>>>>>>>>>>>>>>mid 2004 Some prior>>> Anonymised Record Linkage Identifier CHNo Case Notes- manual/parsing/ scanning

11. Remote Interrogation GENIE Remote Interrogation GENIE Generic Import and Export GP Clinical Systems Data In StandardFormat Erroneous Data Clean Data Previous Export == Regional repository Data For Export Currently operational in Tayside, Glasgow and Lothian

12. 76 General Practices 1000 Networked PCs NHS Tayside I & CT Department Acute Trust Sites Health Board Sites Primary Care Trust Sites 3 Hospitals 3000 Clients 5 Sites 300 Clients 20 Hospitals 700 Clients NHSNet The Internet Firewall Local Authority Perth & Kinross AngusDundee North-East Fife Other Trusts & Boards SchlumbergerSema Mainframe Services Firewall NHSTayside ICT Department Communications Infrastructure

13. Web Services a standard means of interoperating between different software applications, running on a variety of platforms and/or frameworks.

14. Patient Summary for clinicians

15. Summary for patients NHSTayside IT for managed clinical networks –DARTS –HEARTS

16. Available results reduce visits

23. How easy or difficult is it for you to get access to the internet?

24. Health Use Internet Have used for this purpose –Health-related information 34% Is there anything which you have personally never used the internet to do but which you would like to? –Get medical information/advice 7% MORI 2005

25. Seniors Seeking Health Information Need Help Crossing "Digital Divide" Voelker R JAMA. 2005;293:1310-1312.

28. Multi-agent Systems in Development Patients electronic rights represented and protected by their agents Agents interacting on behalf of patients with electronic systems including web services, databases, and agents representing other individuals, organisations and functions. patient agent collator Web service: Trials list audit + regs trials Data? History Anonymised Access? Logs Suitable? Trials GP surgery hospital other stakeholders…

29. Ferguson T, Inverting the power Pyramid, Consumer Health informatics, Healthcare Forum, 1995 Record linked data and the web enables the Information Revolution in health care