Fred and his dog Using communication and social media for patients with multiple problems

1. Fred and his dog Using communication and social media for patients with multiple problems Mary Hawking GP Dunstable John Perry prize 2009 UKCHIP level 3 member PHCSG (Primary Health Care Specialist Group) Committee member EMIS NUG NYHDIF Conference 2011

2. History of Fred • EoE LTC scenario as Adam • In scenario for SRPG report 2009 • At HC2011 with confidentiality issues • PHCSG adoptee • CLICSIGs around use of social media • Looking into what is already available NYHDIF Conference 2011

3. Fred • 70 yr old lives alone with dog • Recent amputee – leg • Multiple LTCs: DM, RhA, COPD, depression. • Medical care from GP, Community Matron, and 4 different AQP teams. • Formal domiciliary care both social & medical • Informal support network • Responsibilities - dog NYHDIF Conference 2011

4. Objectives • Support Fred living independently at home • Prevent harm from:- • Lack of communication around social care • Medical accidents and safety breaches • Lack of essential medical information • Uncoordinated care • Unnecessary admissions • Omission needed care from unassigned responsibility • Use of modern ICT to enable above. NYHDIF Conference 2011

5. Keeping Fred at home.. NYHDIF Conference 2011

6. Fred’s support • Direct official care at home • DNs (insulin & stump) • Carers • Social support e.g. lunch clubs, day centres • Rehabilitation • Shopping & housework • Dog • Informal care network • Medical care from multiple providers • Communication between previous three NYHDIF Conference 2011

7. A Fred-friendly interfacewhich needs content NYHDIF Conference 2011

8. Management by multiple medical teams Informing people when Fred not home Informal support network Calendar management Difficult – discuss later Messaging Single point of contact Phone/fax/acknowledgement RallyRound http://rallyroundme.com/welcome or similar Phone Care coordinator “Manuel, when faced with a problem you do not understand, do any part of it you do understand, then look at it again”Robert Heinlein, The Moon is a Harsh Mistress. NYHDIF Conference 2011

9. RallyRoundhttp://rallyroundme.com/welcome NYHDIF Conference 2011

10. RallyRound 2 NYHDIF Conference 2011

11. Patient centric Who is responsible? NYHDIF Conference 2011

12. Who is responsible? What information do all providers need to avoid harm? Buck stops where? No model for shared care Medication Actions of others in real time Plans/pathways Pecking order Agreed coordination Information and Clinical Governance in Fred’s medical care NYHDIF Conference 2011

13. Care shared between medical teams • Fred has 4 LTCs + amputation • Medical management of each condition by different AQP plus GP, DN and other services • Problems with coordinating and prioritising • No single source of real time information • Considerable risk of harm due to lack of information. NYHDIF Conference 2011

14. Many medical conditions Management of one condition impinges on others No model for this No system for communication or information No prioritisation in management This is the pattern for future Each managed by different team Pathways may not be provided by single AQP Communication/shared care agreement between teams Lack of record information Lack of information on medication Followup & monitoring Coordination Responsibility The underlying problem NYHDIF Conference 2011

15. Telemedicine Virtual Wards Community Matrons Clinical Portals Patient controlled records SCR SSEPRs Purposive record sharing e.g EMIS Web & MIG Require infrastructure One central organisation in control Not available in England Patients Know Best Howareyou (not to be confused with HowRU) Information entered & controlled by patients Limited GP data only Governance issues Difficult many-to-many Governance issues What is available? NYHDIF Conference 2011

16. Telecare Virtual Wards Community Matron Pros Single path responsibility Clear organisation Virtual inpatient model Cons ? Suitable for Freds Difficult to implement with multiple AQPs Medical responsibility? Single organisation solutions NYHDIF Conference 2011

17. Guided Carehttp://www.guidedcare.org/ NYHDIF Conference 2011

18. Whole record upload Patient Access http://www.htmc.co.uk/ SCR +/- enrichment Virtual records EMIS Web SSEPRs (SystmOne) Patient held records PMR websites http://www.patientsknowbest.com/ https://www.howareyou.com/ Others? Pros & Cons Hampshire read only PAERS read only GP Virtual & SSEPR need proprietary software GP only (apart SSEPRs) Complicated sharing arrangements Would need to be regarded as prime entry Updating Confidentiality Access control Recordsalready available NYHDIF Conference 2011

19. Patient Record Access NYHDIF Conference 2011

20. Patients Know Besthttp://www.patientsknowbest.com/ NYHDIF Conference 2011

21. How are you?http://www.patientsknowbest.com/ NYHDIF Conference 2011

22. How are you? Not to be confused with HowRU?.....http://www.abies.co.uk/howru NYHDIF Conference 2011

23. Major risk to patient AQPs with own pathways Independent prescribers Real Time information Compromise Is a common medication record possible/desirable? https://woodcote.wordpress.com/2011/04/27/medication-repository-anyone/ Errors common And other AQPs – including GPs Only qualified in own specialities Need coordinated ICT Care coordinator Agreed responsibilities Medication NYHDIF Conference 2011

24. Will DALLAS solve Fred’s problems? • DALLAS - (Delivering assisted living lifestyles at scale) • Following the WSD (Whole System Demonstrator) program • Funded • Needs many participants to submit bid • Kings Fund event http://www.kingsfund.org.uk/events/past_events_catch_up/supporting.html#tab_1 NYHDIF Conference 2011

25. DALLAS – caveat ref Fred • Projects at Kings Fund all telecare with single organisation backup • Majority single LTC • Information into GP system: not out of it • http://www.telehealthsolutions.co.uk/products/home-pod/ • WSD & DALLAS about admission prevention rather than holistic medical care. NYHDIF Conference 2011

26. Telecare communicationTwo way communication? NYHDIF Conference 2011

27. Conclusions - 1 • New patterns of care need new organisational structures • Multiple medical care from multiple providers • Need new structures • Who is in overall control • Role of GP • Role of CCG • Medical Defence Organisations • Information is essential • Record • Medication • Activity • Real time • Whole System approach essential NYHDIF Conference 2011

28. Conclusions - 2 • Fred’s medical needs/care not covered fully • Depending on ICT requires:- • Organisation • ICT infrastructure • IT literacy • Patient • Care providers • User-friendly interface • Disability and access issues • Long term planning • Cooperation between organisations and individuals • Management NYHDIF Conference 2011

29. Is there the will - or ability - to look after Fred? • Questions? NYHDIF Conference 2011