1. Better Care Better Health Better Life Opportunities and Challenges of Using Electronic Health Records to Enhance Patient Care Dr Amir Hannan Full-time General Practitioner Primary Care IT lead, NHS North-West Information Management & Technology lead, NHS Tameside & Glossop Haughton Thornley Medical Centres, Hyde, Cheshire, England Member of the National Clinical Reference Panel for Summary Care Record, NHS Connecting for Health www.htmc.co.uk amir.hannan@nhs.net 14 th September 2010 Cartoon taken from www.mediclicks.net

2. Better Care Better Health Better Life Shared decision-making will become the norm: no decision about me without me

3. Better Care Better Health Better Life Summary HICAT Top 10 QIPP Clinical engagement strategy Data Protection Act and PAERS Patient access to electronic health records Records Access in Nursing Homes Records Access in hospitals (Renal Patient View)

4. Better Care Better Health Better Life NHS North-West: The clinical IT team Senior Clinical Advisor Andrew Coley Primary Care IT Lead Amir Hannan Secondary Care IT Lead Bibhas Roy Mental Health IT Lead Asad Sadiq Lorenzo IT Lead Sydney Schneidman Diagnostics IT Lead Rhidian Bramley

5. Better Care Better Health Better Life The HICAT Mission Statement The Health Informatics Clinical Advisory Team works across the complete healthcare spectrum ensuring that the people of the North West enjoy better care, better health and a better life, through the innovative and efficient use of Information Technology. The team aspires to: 1.Ensure that the North West leads the country in terms of setting a regional structure of expert clinicians for championing the use of Information Technology 2.Engage and empower clinicians to enable them to play a central role in the development and deployment of IT Systems & solutions 3.Reduce the IT related bureaucratic and administrative mess that clinicians find themselves in 4.Assess and promote the piloting and implementation of new to the market Information Technology 5.Ensure organisations use systems that are inter-operable 6.Ensure that Health Informatics is embedded into the undergraduate and postgraduate medical curriculums 7.Put patients at the heart of Health Informatics by empowering, educating and enabling them to make informed decisions about their own health, through accessing personal and clinical information

6. Better Care Better Health Better Life Informatics Review Top Ten Informatics Contributions to QIPP Map of Medicine Care Records Mobile Working Working with Partners Voice to text Collaboration Tools Patient Services/PROMS Telehealth/Telecare/Videoconferencing Data to Intelligence Technology Management Better Care Better Health Better Life

7. Seven key beliefs 1.Genuine engagement occurs most effectively following debate at a local level 2.Place the patient at the centre of a cultural move towards a new pathway 3.“Observability & Trialability” is compelling Rogers & Plsek 4.Local clinical leaders are essential, they often have legitimacy with their colleagues and are seen as “honest brokers” 5.When a new system has been applied successfully in a local context, this “strength of evidence” is very compelling 6.Align roles and responsibilities between clinical leaders and managerial directors 7.The request for a clinician to change their working process will produce dissonance

8. Better Care Better Health Better Life Disengagement Engagement Dissonance Behavioural management And transformational change

9. Better Care Better Health Better Life New Double Helix Approach Patients Pathway Driver Value Belief Engagement

10. Better Care Better Health Better Life Chief Clinical Officer Clinical Advisor Acute Care Clinical Advisor Mental Health Clinical Advisor Primary/Community Clinicians for Product DevelopmentMultidisciplinary clinical design advisors Clinicians for Product TestingMultidisciplinary clinical governance advisors Multidisciplinary strategic clinical leaders Clinical Champion to bring about Clinical Engagement and imbedding Awareness-raising Clinical volunteers Early implementers Dissemination Acceptance and implementation Imbedding Clinical Engagement Escalator Clinicians for Product Testing Clinicians for Product Development Aligned with Managerial Colleagues Project Plan

11. Better Care Better Health Better Life “The most under-utilised resources the NHS has are patients and information” Dr Richard Fitton GP, ex-Caldicott Guardian, NHS Tameside & Glossop 2003

12. Better Care Better Health Better Life Tension between Information Governance and Clinical Governance Confidentiality Information security NHS Records Management Standards and Guidance Information Governance Clinical Effectiveness Risk management effectiveness Patient experience Communication effectiveness Resource effectiveness Strategic effectiveness Learning effectiveness Clinical Governance

13. Better Care Better Health Better Life Caldicott Guardian – the Guardian Angel above us all! Information Governance Clinical Governance A Caldicott Guardian is a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information-sharing. The Guardian plays a key role in ensuring that the NHS, Councils with Social Services responsibilities and partner organisations satisfy the highest practicable standards for handling patient identifiable information.

14. Better Care Better Health Better Life Safety vs Confidentiality The Declaration of Human Rights balances the right for life and security with the right for a private life You cannot have a private life if you have died of a medical accident (10,000 each year in the UK) Article 3. Everyone has the right to life, liberty and security of person. Article 12. No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks. The DPA review 11 07 2008 demonstrates PROPORTIONALITY. What is most important: patient safety or confidentiality? It is a balance that has to be thought about planned and audited. (Thanks to Dr Richard Fitton, ex-Caldicott Guardian, NHS Tameside & Glossop)

15. Better Care Better Health Better Life The Partnership of Trust

16. Better Care Better Health Better Life 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. Better Care Better Health Better Life Data Protection Act SCHEDULE 1 The data protection principles Part I The principles 1 Personal data shall be processed fairly and lawfully and, in particular, shall not be processed unless— to be fair and lawful patients need to be able to know what is being processed (a)at least one of the conditions in Schedule 2 is met, and (b)in the case of sensitive personal data, at least one of the conditions in Schedule 3 is also met. 2 Personal data shall be obtained only for one or more specified and lawful purposes, and shall not be further processed in any manner incompatible with that purpose or those purposes. When patients can see audit trails they can help to audit what the data is processed for and when it is being processed inappropriately. 3 Personal data shall be adequate, relevant and not excessive in relation to the purpose or purposes for which they are processed. When patients can see and contribute to the record they can help decide when data is excessive in relation to the purpose for which it is being processed. 4 Personal data shall be accurate and, where necessary, kept up to date. Patients can help keep the data accurate and up to date – reviewing it and pointing out errors and omissions. 5 Personal data processed for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes. Patients who access their records can help to decide what should be “deleted” when it is no longer necessary. 6 Personal data shall be processed in accordance with the rights of data subjects under this Act. Patients have rights to see their records (Section 7),to prevent processing likely to cause damage or distress (Section 10), in relation to automated decision-taking (Section 12) and of rectification, blocking, erasure and destruction (Section 14) Seeing their records can help them have express these rights. 7 Appropriate technical and organisational measures shall be taken against unauthorised or unlawful processing of personal data and against accidental loss or destruction of, or damage to, personal data. Patients checking their record contents and audit trails is one appropriate measure. 8 Personal data shall not be transferred to a country or territory outside the European Economic Area unless that country or territory ensures an adequate level of protection for the rights and freedoms of data subjects in relation to the processing of personal data. 36 Domestic purposesPersonal data processed by an individual only for the purposes of that individual’s personal, family or household affairs (including recreational purposes) are exempt from the data protection principles and the provisions of Parts II and III. Patients who access their own records can share them any where. Comments in RED added by Dr Richard Fitton, ex-Caldicott Guardian, NHS Tameside & Glossop

18. Better Care Better Health Better Life With thanks to Nigel Landman, QT & C ltd

19. Better Care Better Health Better Life What is needed to improve compliance / concordance Build trust relationship through increased transparency Show the “planetary” systems revolving around the patient – what is available for them now! Help patients and their families to understand where they are, where they could be and how to get there Provide tools for patients – satellite navigation for healthcare Simple explanation of how to get the best care possible Move patients from being passive recipients to active partners…

20. Better Care Better Health Better Life David Anthony Smith I record my blood sugar, blood pressure, weight To help myself and the clinician Improve my self care I have 5 consultants in 3 hospitals No sharing of info even in the same hospital I print off relevant details of my records, graphs of results and effects of lifestyle changes on them and bring this to all my consultations This saves time and money for me and the NHS Average diabetic patient spends 2 hours 31 mins with a clinician and 8757 hours 29 mins on their own in a year! No surprises: Map of Medicine! Patient access to the records and the Map help to improve OUR UNDERSTANDING

21. Better Care Better Health Better Life Practice-based web portal: www.htmc.co.uk

22. Better Care Better Health Better Life Test Patient Record

23. Better Care Better Health Better Life Test Patient Record

24. Better Care Better Health Better Life Test Patient Record

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26. Access to full health record Test Patient Record

27. Better Care Better Health Better Life Access to full health record Test Patient Record

28. Better Care Better Health Better Life Free text as well as coded data with information links Test Patient Record

29. Better Care Better Health Better Life Test Patient Record

30. Better Care Better Health Better Life Test Patient Record

31. Better Care Better Health Better Life Practice-based web portal: www.htmc.co.uk

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35. “Patients, Carers and Information are the most under-utilised resources the NHS has” Dr Richard Fitton and Dr Hannan 2010

36. Better Care Better Health Better Life We have over 800 out of 12200 (7%) patients who have access to their GP electronic health records

37. Better Care Better Health Better Life Renal Patient View www.renalpatientview.org

38. Better Care Better Health Better Life Renal Patient View www.renalpatientview.org

39. Better Care Better Health Better Life Renal Patient View www.renalpatientview.org

40. Better Care Better Health Better Life Percentage of renal patients registered with Renal Patient View in each unit since starting Percentage of patients registered in unit with Renal Patient View

41. Better Care Better Health Better Life Involving Patients and Citizens Empower the patient inside the consultation (front-line) Empower the patient inside the practice (PPG, Educational Programme) Empower the patient strategically in the organisation (PCT / Acute Trust / SHA / DH) Empower the patient at national events to help change culture Empower the patient to teach other clinicians / managers Empower the patient to help each other Empower the patient wherever they may be Empowered patients NEED access to their own data AND trusted information about their health (pathway, protocol)

42. Better Care Better Health Better Life Are you eMPOWERed yet? e Medical Patient and the Public cOmmunication World wide web Electronic Record

43. Better Care Better Health Better Life Practice-based web portal: www.htmc.co.uk

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45. Practice-based web portal: www.htmc.co.uk

46. Better Care Better Health Better Life Governance Explicit consent process –What information are patients provided with? –How do we check that patients have understood the issues? –Children and mental health –Harmful data and 3 rd Party Data –Can we provide proof for external scrutiny? –Is it transferable to other providers? Local Care Record Development Board

47. Better Care Better Health Better Life Explicit Consent Process

48. Better Care Better Health Better Life What about those unable to give explicit consent eg in nursing homes Proportionality Pilot in Nursing Home –Explicit consent should be sought first –Lasting Power of Attorney –Unable to give consent Nurses provided with IG training Enable access via EMIS Web / EMIS Access Identify issues and solutions – FAQs Enable access in Residential Homes Does it help to manage costs and enable QIPP

49. Better Care Better Health Better Life Opportunities / Challenges Move away from single solution towards multiple solutions depending on needs and acceptance Renal Patient View SystmOne soon from TPP Summary Care Record and Patient access to EHR and Advanced HealthSpace / Personal Health Records Knowledge-based healthcare systems Governance – let’s get consent right Jumping the chasm – political, economic, healthcare and personal pressures will drive change coupled with experience of innovators and early adopters Business model to be defined by late adopters Emergent change, getting requirements right, clinical engagement, GPs, Managing Budgets

50. Better Care Better Health Better Life What can you do to help Help to raise the local debate from “who leads” to what the issues are Can we really deliver high quality and contain costs without Records Access? Help to build a vision of the majoroty of practices offering Record Access as per White Paper 2 years from now! Identify 1 or 2 practices NOW that wish to offer records access and help to “nurture” them Encourage your local renal unit to set up Renal Patient View

51. Better Care Better Health Better Life Conclusion eMPOWERed patients need access to their medical records AND high quality information about their care AND how to manage it. e Medical Patient and the Public cOmmunication World wide web Electronic Record

52. Better Care Better Health Better Life Isn’t it time YOU got access to YOUR records and started using it to improve YOUR health and enter the world of REAL-TIME DIGITAL MEDICINE ? Dr A Hannan amir.hannan@nhs.net