1. SELF CARE AND PATIENT ACCESS TO THEIR ELECTRONIC HEALTH RECORDS Dr Amir Hannan Full-time General Practitioner Haughton Thornley Medical Centres, Hyde Information Management & Technology lead, NHS Tameside & Glossop Primary Care IT lead, NHS North-West Member of the Clinical Leaders Network www.cln.nhs.uk www.htmc.co.uk amir.hannan@nhs.net Yvonne Bennett Patient of Haughton Thornley Medical Centres Secretary of HTMC Patient Participation Group Member of the National Clinical Reference Panel for HealthSpace / Summary Care Record NHS Connecting for Health yvonneb@peakautos.fsnet.co.uk

2. Self Care Week

3. Ensuring the commissioning framework rewards outcomes improvement We want the principle of “shared decision- making” to become the norm: no decision about me without me.

4. Ensuring the commissioning framework rewards outcomes improvement Involving patients in their care and treatment improves their health outcomes (and)…their adherence to a chosen treatment

5. Ensuring the commissioning framework rewards outcomes improvement The primary purpose of the NHS is to improve the outcomes of healthcare for all

6. Monitoring and rewarding outcomes improvement within local commissioning systems NICE provides quality standards Local HealthWatch organisations will ensure that the views from patients and carers are a part of local commissioning… NHS Commissioning Boards provide quality payments GP consortia will receive….a premium for achieving high quality outcomes and for financial performance

7. away from information belonging to the system, to information enabling patients and service users to be in clear control of their care; away from patients and service users merely receiving care, to patients and service users being active participants in their care; away from information based on administrative and technical needs, to information which is based on the patient or service user consultation and on good clinical and professional practice; away from top-down information collection, to a focus on meeting the needs of individuals and local communities; away from a culture in which information has been held close and recorded in forms that are difficult to compare, to one characterised by openness, transparency and comparability; away from the Government being the main provider of information about the quality of services to a range of organisations being able to offer service information to a variety of audiences; and in relation to digital technologies, away from an approach where we expect every organisation to use the same system, to one where we connect and join up systems. This government is committed to moving:

8. Data InformationKnowledge Knowledge-Driven Healthcare Systems

9. Data InformationKnowledge Knowledge-Driven Healthcare Systems Knowledge Skills Attitudes

10. Data InformationKnowledge StructuresProcesses Outcomes Knowledge-Driven Healthcare Systems Knowledge Skills Attitudes

11. Data InformationKnowledge StructuresProcesses Outcomes Knowledge-Driven Healthcare Systems Knowledge Skills Attitudes

12. Data InformationKnowledge StructuresProcesses Outcomes Knowledge-Driven Healthcare Systems Knowledge Skills Attitudes

13. Family of classifications Sharing the records Immediate Care Continuing Care Preventative Health Promotion Patients Public Admin Government Standards Science & Research Clinicians

14. The “eMPOWERed Patient” Reactive vs Proactive Passive Enabled Informed Empowered eMPOWERed Patient Person Family

15. Partnership of Trust

16. The Paradigm Shift in Healthcare IT based health care system Internet Increase in health literacy Patient access to Electronic Health Record Patient choice Choice leads to better outcomes

17. Framework for sharing clinical knowledge across care settings Localisable benchmark for clinical processes Evidence based care pathways available in any setting

18. Practice-based web portal www.htmc.co.uk

26. Decision Aid: www.prosdex.com

27. Health Authority GP practices Community Health Visitors District Nurses Community Mental Health Team Acute Trust Management Clinicians ‘Old’ organisations working within a Local health Community Practice Managers Receptionists Secretaries Counsellors Nurses Local Medical Committee GPs

28. PCT Chief Executive PCT Board PEC Directors e.g. Finance Clinical Leads RBMS / Tier 2 Communications Manager etc GP practice Community Health Visitors District Nurses Community Mental Health Team Specialist nurses e.g. dermatology GPwSIs Salaried GPs OoH service SHA Acute Trust Management Clinicians PALS Social Services Patient Participation Groups Patients Voluntary Sector MIND Victim Support Age Concern Local Government Others Health Protection Unit Immunisation Co-ordinator Oldham PCT Practice Managers Receptionists Secretaries Counsellors Nurses LMC GP Pharmacists Co-op Independents “Old” organisations working within a Local health Community CATS GM NHS CATS Local CATS

29. SHA Community Acute Trust Others General Practice Patient PCT Social services Pharmacists Voluntary sector Local gov 3-D View of Reality Today showing Complexity of Communication Acute Trust Acute trust PCT CATS Private hospital

30. SHA Community Acute Trust Others General Practice Patient Social services Acute Trust Acute trust PCT Voluntary The NHS and Partner OrganisationsThe Patient’s World Patient Family Friends Work TV, radio, newspaper Surgery waiting room Surgery consulting room A & E OOH waiting room CATS PCT Pharmacists Local Govt Private hospital Text / Mobile “Facebook” “Second Life” Google / internet Nintendo Wii, PS3, XBox Hospital bed Blog

31. SHA Community Acute Trust Others General Practice Patient Social services Acute Trust Acute trust PCT Voluntary The NHS and Partner OrganisationsThe Patient’s World Patient Family Friends Work TV, radio, newspaper Surgery waiting room Surgery consulting room A & E OOH waiting room CATS PCT Pharmacists Local Govt Private hospital Text / Mobile “Facebook” “Second Life” Google / internet Nintendo Wii, PS3, XBox Hospital bed Blog RED = Areas we have influenced in the practice

32. An eMPOWERed Patient e Medical Patient and the Public cOmmunication World wide web Electronic Record e d

33. So what makes us different? We take responsibility for our own health We are part of a ‘partnership of trust’ with our doctor We have access to a computer, not necessarily our own Or these days it may be a mobile phone or I pad We are NOT STUPID, we are aware of security issues We tend to –Shop online –Check insurance quotes –Book holidays –Use internet banking –And many more So WHY NOT maintain our health online!

34. Partnership of Trust Patient/Doctor Doctor/Patient Illustration from Health Service Journal

35. A consultation with the doctor We discuss with the doctor our health problem We listen to their advice We may question their suggested medication –This isn’t to challenge the doctor but to find what is best for us We may not accept the medication just then We may want to do our own research We may have personal moral issues with some medications We DO get back to our doctor

36. What do I need for my care? I want to be able to do everything I can to the best of my ability I want to know the bigger picture and not just the next step I want to review things in my own time so that I can better monitor my own health and that of my loved ones I want to become EMPOWERED by being enabled, informed, listened to and given choices I want the best healthcare around me!

37. So where do we go? Everybody has their own favourite sites Encouraged to use trusted websites –These could be Our Practice website www.htmc.co.uk patient.co.uk NHS Choices BBC

38. What do I need for my care? www.htmc.co.uk

39. Once we have decided We go back to see our doctor We then discuss our findings We could have a different medication to the one suggested Or we just accept the offered medication

40. What do I need to do? Appointment setting via EMIS Access

41. I may be due for my repeats Prescription ordering

42. What do I need for my care? Access to full health record

43. What do I need for my care? Free text as well as coded data with information links

44. Results Abnormal test results

45. Information re blood tests

46. Letters

47. www.htmc.co.uk Map of Medicine - Healthguides

48. So what next? We now take charge We decide to try the new medication We fit this into our regime How? Whatever works for us

49. But what happens if things change? Our condition may deteriorate –It may be that we need to have special care –It may be that we need residential care –It may be a nursing home –It may even mean a hospice It may not be ourselves but ones we care for –The problems can still be the same –And the needs can be the same

50. What I have done I have made sure that my family are aware that I want my records shared with any nursing home/hospice My family are also aware of any healthcare that I want or do not want My husband has also done the same We are both happy for our sons to have access to our records –Whether we are alive or dead To us, this is common sense and we would encourage others to do the same

51. Haughton Thornley Medical Centres, Hyde

52. EMIS Access Across NW Ordering prescriptions and booking appointments online

53. EMIS Access Across NW Full access to the GP electronic health record Number of Practice using the MR module by PCT PCTs March 2010 Central Lancashire PCT1 Cumbria PCT2 East Lancashire PCT1 Liverpool PCT1 North Lancashire PCT1 Oldham PCT1 Stockport PCT2 Tameside & Glossop PCT4 Western Cheshire PCT1 Grand Total14

54. Workshops in the NW 1 st workshop for 15 practices to learn lessons about their access to records 2 nd workshop amongst representatives from 239 practices that have are offering online ordering of prescriptions and booking appts but not full access to the records Lessons learned will help to develop further Programme of Work Outcome: More practices offering records access and raise standard of care

55. Map of Medicine Evidence based localised patient pathways across primary and secondary care

56. www.renalpatientview.org Patient access to secondary care data

58. Renal Units Using Renal Patient View 43 out of 78 units nationally

59. Focusing on the outcomes that matter to patients Principles of Records Access You have the right of access to your own health records. These will always be used to manage your treatment in your best interests.(NHS Constitution) www.rcgp.org.uk/pdf/Health_Informatics_Enabling_Patient_Access.pdf

60. Focusing on the outcomes that matter to patients Patients accessing their personal records and inputting personal data Commission evidence based patient pathways eg Map of Medicine Improved compliance, concordance, quality and outcomes with constrained costs and variation with happy and healthy patients, staff and organisations Patient Reported Outcome Measures Decision Aids Patient Experience

61. Carers and Nursing Homes

62. Next steps Think about self care Read the guidance on enabling patients to access electronic health records Ask your own GP for access to your own records online Check what your own GP website is offering Contact your GP consortia leads Contact your PPG leads and patient groups including LiNKS Contact your self care SHA lead Contact the Long Term Conditions leads Find out what is happening with Map of Medicine in your area Have you got your Map of Medicine pathway? What about passing your own record to your children as part of your care plan? We have only just started to scratch the surface…

63. Thank You Isn’t it time YOU got access to YOUR records? www.htmc.co.uk yvonneb@peakautos.fsnet.co.uk amir.hannan@nhs.net