1. © National Programme for Information Technology, London, 2004. All rights reserved. British Computer Society The Care Record Service and Information Governance functions Stephen Elgar 14 th March 2006

2. © National Programme for Information Technology, London, 2004. All rights reserved. Introduction The Care Record Service – what is it? Where have we got to in London? Information Governance functions / tools that underpin the Care Record Service Experience in use of these tools Active Information Governance controversies

3. © National Programme for Information Technology, London, 2004. All rights reserved.

5. The future: Eldorna Smith Eldorna (65) has a fall. Her neighbour discovers her in the evening and calls an ambulance.

6. © National Programme for Information Technology, London, 2004. All rights reserved. The ambulance crew uses a protocol of tests that show a minor infection could be making her unsteady. They rule out broken bones and check her electronic health record with her for other potential causes.

7. © National Programme for Information Technology, London, 2004. All rights reserved. Eldorna doesn’t want to go to hospital. The crew consult a doctor in the A&E via telelink. The doctor agrees the diagnosis and sends a prescription electronically that the local pharmacist will deliver with clear instructions. It has been checked against Eldorna’s other medications.

8. © National Programme for Information Technology, London, 2004. All rights reserved. At Eldorna’s request, the crew book an assessment by the intermediate care team, who will visit within two hours and arrange home services. At her request, they also book a follow up appointment with her GP at a time that suits her. They do this online as the surgery is closed. The GP will get a prompt if she doesn’t attend.

9. © National Programme for Information Technology, London, 2004. All rights reserved. The crew leave Eldorna with information about her condition on paper and in her HealthSpace. Eldorna knows that those involved in her care will have access to parts of her electronic record and make notes. (inspired by Surrey Ambulance Service and Chiltern and S. Bucks PCT)

10. © National Programme for Information Technology, London, 2004. All rights reserved. How Spine will work across clusters in an emergency Transaction & Messaging Spine Following an accident Tom visits A&E for assistance.... A&E Doctor needs to view Tom’s Health Record... Search performed - Record is found. PDS PSIS Data +ACF Legitimate relationship is formed. Information is transmitted to A&E Doctor A London resident Tom visits Blackpool....

11. © National Programme for Information Technology, London, 2004. All rights reserved. Transaction & Messaging Spine A&E Doctor views Tom’s Health Record... Carries out investigations & treats Tom... Tom’s Information is Stored in the Local System Electronic Patient Record sent via Spine to the PSIS PSIS Data How Spine will work across clusters in an emergency Discharge Note generated sent to Spine Alert generated sent to GP System via Spine

12. © National Programme for Information Technology, London, 2004. All rights reserved. How Spine will work across clusters in an emergency Transaction & Messaging Spine Tom returns home to London.. GP receives alert & discharge note Orders nursing careOrders nursing care and medication Refers Tom to Physiotherapy (Choose and Book) Refers Tom to Hospital Consultant (Choose and Book) eTP

13. © National Programme for Information Technology, London, 2004. All rights reserved. Care Record Service in London 10 year programme (year 3): 45 / approx 1500 GP Practices with new systems 1/ 30 hospitals (Queen Mary’s Sidcup) Choose and Book; 86% GP Practices able to send & 32 Trusts able to receive (30/185k London / national bookings so far) 7/22 PACs (2/8 Radiology in addition) For 2006/7: Single Assessment Process (Older People) – 3 Boroughs / PCTs Plan for 7 Hospitals, 5 Mental Health Trusts, 22 PCTs PACs – to be completed Pilot of Clinical spine

14. © National Programme for Information Technology, London, 2004. All rights reserved. Information Governance functions / tools that underpin the Care Record Service

15. © National Programme for Information Technology, London, 2004. All rights reserved. Patient confidentiality No surprises: patients see and control what information is shared – Patient Guarantee

16. Information Governance functions / tools Function Status Recording patient consent for information sharing Nominally live but key function concerns “Clinical spine” that is not yet live Patient Access; Health Space – telephone and web live for Choose and Book, no dates for later functionality Role-based Access Control (RBAC) defines the functions available to staff Live – some elements are application- specific Smartcard authentication – “chip and PIN”200k Smartcards in England & 25k in London Legitimate relations for staff to control whose records can be accessed Application & Organisation specific at the moment Sealed envelopes; patients able to have part of their information sealed away Not yet live Audit trails Live; Application specific and varied at the moment Alerts sent to Trust staffApplication specific and varied at the moment Psedonymisation; information for reporting without patient id Will be live shortly as part of Secondary Use Service

17. © National Programme for Information Technology, London, 2004. All rights reserved. Large-scale use of Smartcards and Role-based Access Control Choose and Book – issues with Smartcards: Effort of Smartcard distribution and provision of support for use (e.g. loss / forgetting cards and PINs) Locums Tension between local developing business process and national roles (administrative staff being given Clinical roles?) Queen Mary’s Sidcup Hospital (400 beds with ED) = 1000+ users with Smartcards “for the most part national roles have worked with a proportion of staff with locally added functions at minimal administrative effort” Investigating proportion / effort as part of a review in progress HR team run Smartcards administration now

18. © National Programme for Information Technology, London, 2004. All rights reserved. Active Information Governance controversies London has a number of stakeholder groups including: –London Caldicott Guardians –London Information Group (non-clinical) –London CFH LMC Group Controversies: –“openness” / who can view & who can edit demographic spine (choose and book application) –Legal basis for information sharing –“openness” / who can view & who can edit Smartcard spine –Sharing of Smartcards –National Insurance number held on Smartcard spine –Identity checks for Smartcards issue (lack of co-ordination with other HR requirements) –Recording on paperwork required to issue Smartcards (National Insurance & Passport number) –Locums and temporary staff –Tension between local developing business process and national roles (administrative staff being given Clinical roles?)

19. © National Programme for Information Technology, London, 2004. All rights reserved. Summary Care Record Service is here! Information Governance tools are being implemented incrementally Consultation with the Public continues & Publicity campaign is just starting in Trusts Stakeholder groups are gaining an understanding and are “storming!” – controversies are being addressed

20. © National Programme for Information Technology, London, 2004. All rights reserved. Stephen Elgar NPfIT London Information Governance Team Leader stephen.elgar@cfh.nhs.uk 07736 706 538