A Clinical Perspective on the Future

1. A Clinical Perspective on the Future Health Informatics Unit 10th Anniversary Event to be held on 15 September 2011 MARTIN SEVERS

2. Prediction is difficult especially about the future1 • Conflicts of Interest • College activity: MIG, ACIG, • National Roles: IHTSDO, ISB & surviving........ • Presentation • Background • Medical Adaptation • Professional Leadership • Weird Stuff 1Niels BohrDanish physicist (1885 - 1962)

3. CHANGE Autonomy as the dominant moral force Patient as a partner Patient Choice Expert Patient Ageing society EFFECT Stronger information governance Shared decision making Wider access to knowledge Devolved clinical decision making to patient Long term conditions dominate New continuum involves disability and handicap Major Societal Change

4. The Tunbridge Report: 1965 • Output: Report with 29 recommendations which was never implemented nationally • Note: • Contains many of the ‘new’ principles, services and standards for the 21st Century • NHS Number; Referenced and managed templates and forms; professional education & training; ontology of records and documents; Uniform section names and meanings; a permanent body and point of reference for record keeping etc

5. KörnerCommittee • The NHS/DHSS Steering Group on Health Services Information3 was appointed by the Secretary of State for Social Services in February 1980 with the following terms of reference: • To agree, implement and keep under review principles and procedures to guide the future development of health services information systems; • To identify and resolve health services information issues requiring a co-ordinated approach; • To review existing health services information systems; and • To consider proposals for changes to, or developments in, health services information systems arising elsewhere and if acceptable, to access priorities for their development and implementation. Purpose= Statistical knowledge: Focus= Populations of patients at the service level and above: Principle= Primary data needed by DMT {‘optional’ in DD} & secondary was a subset of that for national purposes {‘mandated’ in DD}

6. Medical Adaptation1 • ‘The NHS has been shielded from the technological changes in wider society’ • ‘As the Twitter generation ages..........’ • Kinesh Patel BMJ 2011;343:d5483 • People with Diabetes fair better in practices that use electronic records • Good Outcomes HbA1c 70% vs 48% NEJM 2011;365:825-833 • Examples from Kaiser - Permanente 1 The ability of the individual doctors to adapt and make best use of the prevailing technical environment

7. Professional Leadership • What should the profession be doing for the doctors? • What should the doctors be doing for the profession? In 1949 Sir James Spence, wrote, ‘The essential unit of medical practice is the occasion when, in the intimacy of the consulting room or sick room, a person who is ill, or believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation and all else in the practice of medicine derives from it.’ ‘Professionalism is all about trust’ Technical supplement to a report of a Working Party of the Royal College of Physicians of London by Dame Margaret Turner Warwick 2005

8. Professional Leadership: College • Information and Practice leadership • Knowledge and Skills • Knowledge of patients condition [86 vs 60%; old vs young] • Education & decision support & knowledge support • Awareness of patients history [Only 80% were satisfied] • Record keeping & communication standards; application drivers license • Involving the patient in decision making [~ 50% satisfaction] • Sharing letters NOW; EPR access 10 care. How to do it? Physician requirement for system specification in 2016 • Personal Qualities • Truth, Integrity and dignity: how done with computer in room? ‘Information without perspective is just a higher form of ignorance’. Professionals provide this perspective. Technical supplement to a report of a Working Party of the RCP by Dame Margaret Turner Warwick 2005

9. Professional Leadership: College • Accessibility [40-65% satisfaction; timely and convenient access1] • The virtual consultation; standards and best practice • Information and Practice support tools • Poor system poor evidence of care? • What should a physician expect from a clinical information system provided to support care of patients? • How do bad system features get highlighted and reported • Avoidance of de-professionalising through data • Physicians should collect data for managers and others! • ‘Perspective’ means an educated profession on informatics 1 Rosen R, Dewar S. On being a doctor – redefining medical professionalism for better patient care. London: King’s Fund, 2004

10. Professional Leadership: Doctors • Education about and conformance with: • Professional standards in record keeping and communication eg RCP standards • Standards and good practice in information management; eg patient identification, (sensible) information governance • Registered Specialists in information management and technology as applied to individuals and populations Eg recognised leaders • Clinicians spend 25% of their time collecting data and using information; 1996/97. This means information can consume 15% of running costs • Comparing Notes; A Study of Information Management in Community Trusts. Audit Commission 1997

11. Weird stuff • Data • Judging clinicians inc. Revalidation • Supporting clinicians • Data standards • Definitions • The machine as a tool or an actor • The humane computer

12. Clinicians will be judged by data • Does the data reflect the nature of care or the information practice or the data standard or all three? • Poor data practice will involve: • Poor leadership and authority • Poor individual use (human) • Poor organisational implementation • Poor incorporation into applications • Poor data standards will involve: • Poor life cycle management • Failure to harmonise with other data standards &/or care [record] practices

13. Professional & Organizational data aspects • Harold Shipman’s Clinical Governance errors included • Incorrect completion of the GP records • Incorrect completion of death certificates  • Incorrect completion of cremation forms  • Incorrect communication of clinical details to GPs • Systematic review • 4589 articles; 174 classified; 52 met inclusion criteria • Lack of standardised assessment of quality of data in electronic records makes it difficult to compare results • Thiru K, et al BMJ 2003:326:1070-2

14. Decision Support may be undermined • Automated Quality Checks on Repeat Prescribing in primary care UK in 3 general practices for four months • Gold standard for knowledge; BNF all prescribing had to have an indication • 14.8% prescriptions had no indication • 62% of alerts were incorrect; 44% due idiosyncratic coding; 43% because of missing mapping between indication to read code in knowledge base • Conclusions • More consistent data collection across multiple sites • Reconciliation of clinicians willingness to infer clinical diagnoses and the machine’s inability to do the same • Rogers et al Brit J of Gen Pract 2003; 53: 838-834

15. Choosing the right data standards • Incorrect use of classification data standards for patient care • Critical Flaws in computer generated letters from A/E to GP • Incomplete or misleading information in 29% • Inaccurate or misleading diagnoses were biggest issue at 46% • Missing information essential to FU was the second biggest issue at 22% • Emergency Medicine 5/2003 • It was concluded that while HES/PEDW data may be useful for some consultants in supporting local appraisal, it does not serve all physicians and cannot support the revalidation of an individual’s fitness to practise. A review of these datasets is recommended to determine whether changes are justified in order to better describe consultant-level activity and performance • The i-Lab project Evaluation Report. HIU RCP September 2006

16. No Profession endorsed Clinical {Business} Definitions • Clinical Profession endorsed business definitions of clinical concepts in the record • May be developed outside of Profession e.g. by NICE • Are crucial when content standards are mandatory • Are crucial when content standards drive multiple national and international secondary purposes WHAT IS THE DEFINITION OF A MYOCARDIAL INFARCTION, WHERE DO I FIND IT AND WHAT AUTHORITY DOES IT HAVE?

17. Definitions • Text based definition • Death of heart muscle by lack of oxygen • Could be carried in SNOMED CT (if desired) • Inferential definition • Defined by relationships in an ontology or terminology • Are held in SNOMED CT • Clinical criteria definition • Definition of recognition eg how do I know I have a patient with this disorder?

18. Clinical Definition of Myocardial Infarction • A simple challenge to the science of medicine and/or professional consensus and/or organisation? • WHO definition [1994] • 2 from 3 of • Chest pain; Q waves on ECG; rise of CK >x2 • ESC & ACC definition [2000] • A + B [one of] • A] Raised level of troponins or CK myocardial B fraction • B] Ischaemic symptoms; ECG changes consistent with ischaemia or infarction; coronary intervention

19. Definition of Myocardial Infarction • Survey 1000 GM and cardiologists [38%] • Standard definitions plus raised markers alone • WHO 163 [45%] • ESC/ACC 158 [44%] • Markers alone 22 [6%] • ‘The wide variety of definitions used will result in patients being given different diagnoses, with implications beyond their immediate management’ • British Journal of Cardiology 2004: 11: 34-8

20. FUTURE [is now] Human to Machine: NCR =Spine Machine to Machine: Messaging Machine as actor : Decision Support Machines as an actor in care NOW Human to Human Human to Human (through Machine) Machine as passive conduit

21. The humane computer • I am concerned by some of the behaviours, beliefs and practices I am witnessing as part of information technology coming to medicine • Establishing ways in which it enhances the personal qualities, knowledge & skills and accessibility of doctors is key particularly the first.

22. My favourite vision of the future • Desmond Tutu: "[electronic health is] a ray of light on the horizon for the health and equity challenges that plague humanity"