International Perspectives: A Personal View


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SNOMED by Professor Martin Severs FRCP FFPHM Chairman Management Board.

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  • Good morning ladies and gentleman. I would first like to thank the New Zealand Ministry of Health in general and Ted Cizadlo in particular for inviting me to give this presentation
  • International Perspectives: A Personal View

    1. 1. International Perspectives: A Personal View Professor Martin Severs FRCP FFPHM Chairman Management Board
    2. 3. Who am I?
    3. 4. Who am I? <ul><li>Consultant Geriatrician at a large district hospital </li></ul><ul><li>Still practice: MAU; OPD and on call like last weekend! </li></ul><ul><li>Professor Health Care for Older People; University of Portsmouth </li></ul><ul><li>Chairman of the Information Standards Board for Health and Social Care in England </li></ul><ul><li>Chairman Management Board for IHTSDO </li></ul>
    4. 5. Why develop the IHTSDO?
    5. 6. Benefits of IHTSDO Membership <ul><li>Proprietary licencing model to co-ownership </li></ul><ul><li>New governance arrangements </li></ul><ul><li>Fair share funding model based on World Bank metrics </li></ul><ul><li>Greater adoption </li></ul><ul><ul><li>Share implementation experience </li></ul></ul><ul><ul><li>Share risk </li></ul></ul><ul><ul><li>Share costs </li></ul></ul><ul><li>Remove obsolescence risk and cost </li></ul><ul><li>Drive global patient record interoperability </li></ul>Member risk cost over time Previous IHTSDO Reduction Time Risk Cost
    6. 7. Where we now?
    7. 8. The Vision <ul><li>To enhance the health of humankind by facilitating better health information management; </li></ul><ul><li>To contribute to improved delivery of care by clinical and social care professions; </li></ul><ul><li>To facilitate the accurate sharing of clinical and related health information, and the semantic interoperability of health records; </li></ul>
    8. 9. Achieving the Vision will require <ul><li>A globally co-ordinated effort </li></ul><ul><li>Agreement on a core Terminology for recording and sharing of health information </li></ul><ul><li>Pooling of resources to share the costs and benefits relating to the development and maintenance of the Terminology Products : ‘Financial Sustainability’ </li></ul><ul><li>A consistent message to industry to promote the uptake and correct use of the Terminology </li></ul>
    9. 10. The purpose of the IHTSDO <ul><li>To acquire, own and administer the rights to SNOMED CT and other relevant assets (collectively, the &quot; Terminology Products &quot;); </li></ul><ul><li>To develop, maintain, promote and enable the uptake and correct use of its Terminology Products around the world; </li></ul><ul><li>To undertake activities required to achieve these purposes </li></ul>
    10. 11. Status of the IHTSDO <ul><li>The IHTSDO is a Danish Association </li></ul><ul><li>The Association is a registered not-for-profit entity in Denmark [23 rd March 2007] </li></ul><ul><li>Articles of Association detail the who, what, where and how of the Association </li></ul><ul><li>The Association owns the intellectual property </li></ul><ul><li>Intellectual property in SNOMED CT and antecedent works (SNOMED 3.5, RT etc.) transferred to the IHTSDO [26 th April 2007] </li></ul>
    11. 12. Status of the IHTSDO <ul><li>The Members control the organisation and the Articles of Association; [subject to Danish Law] </li></ul><ul><li>Nine Charter [initial] Members: </li></ul><ul><ul><li>Australia, Canada, Denmark, Lithuania, USA, New Zealand, Netherlands, Sweden, UK </li></ul></ul><ul><li>Active, but preliminary discussions ongoing with 4 countries </li></ul><ul><li>Expressions of interest from a number of other nations we hope will now join! </li></ul>
    12. 13. Status of the IHTSDO <ul><li>Physical office in the IT University in Copenhagen </li></ul><ul><ul><li>Web site </li></ul></ul><ul><li>Three year support contract with the College of American Pathologists [First IHTSDO Release July 2007] </li></ul><ul><li>New roles within the IHTSDO [at outset interim]; </li></ul><ul><ul><li>Chief Executive Officer [Ulrich Andersen] </li></ul></ul><ul><ul><li>Chief Terminologist [Kent Spackman] </li></ul></ul><ul><ul><li>Chief Quality Officer [Ed Cheetham] </li></ul></ul><ul><ul><li>Small number of administrative staff </li></ul></ul><ul><li>Actively Recruiting Permanent Posts </li></ul>
    13. 14. Licensing of SNOMED CT <ul><li>New licensing arrangements through the IHTSDO have commenced in May 2007 </li></ul><ul><li>Single form of end-user license (Affiliate License) for International Release </li></ul><ul><li>SNOMED CT will be made much more available for research purposes </li></ul><ul><li>Permits world-wide use of SNOMED CT </li></ul><ul><li>Affiliates pay : </li></ul><ul><ul><li>NO fees to IHTSDO for use in any Member nation. All obligations are met by the Member through their IHTSDO membership agreement. Cost-recovery is permitted </li></ul></ul><ul><ul><li>Charges as set by the IHTSDO for use in non-Member nations </li></ul></ul>
    14. 15. Licensing of SNOMED CT <ul><li>Fees are calculated based on a trusted third party metric namely the World Bank GNI Atlas </li></ul><ul><li>The Articles have provisions to help the poorest countries without distorting the fundamental principle of a fair share funding model </li></ul><ul><li>Charges are based on broad categories of affiliate use e.g. per hospital AND are banded according to World Bank GNI Atlas [i.e cheaper in poorer countries </li></ul><ul><ul><li>Charges and fees are published on the IHTSDO web site </li></ul></ul><ul><li>Aim; Simplicity and cost minimisation of licensing [for the IHTSDO AND Affiliates] </li></ul>
    15. 16. IHTSDO Structural Progress Management Board Quality Assurance Committee Harmonisation Boards WG & Research Teams Affiliate Forum Research & Innovation Committee Technical Committee Content Committee Working Groups Working Groups Working Groups GENERAL ASSEMBLY
    16. 17. Patients and Citizens
    17. 18. Major Societal Change <ul><li>CHANGE </li></ul><ul><li>Autonomy as the dominant moral force </li></ul><ul><li>Patient as a partner </li></ul><ul><li>Patient Choice </li></ul><ul><li>Expert Patient </li></ul><ul><li>EFFECT </li></ul><ul><li>Stronger information governance </li></ul><ul><li>Shared decision making </li></ul><ul><li>Wider access to knowledge </li></ul><ul><li>Devolved clinical decision making to patient </li></ul>
    18. 19. Clinician-Patient Consultation <ul><li>The relationship is based on trust: The key unit of medicine </li></ul><ul><li>Any healthcare system should exist to support it </li></ul><ul><li>Many factors conspire against it </li></ul><ul><ul><li>Time </li></ul></ul><ul><ul><li>Loss of tolerance and trust </li></ul></ul><ul><ul><li>Excess of expectation </li></ul></ul><ul><li>The patient record is an accurate and contemporaneous artefact of the consultation [Clinician-Patient interaction] </li></ul>
    19. 20. Patients and Citizens: Perspective <ul><li>Is it possible that Citizens and Patients can safely and effectively fulfil their desired role in health care without access to their records? </li></ul><ul><li>Systemically desirable and practically feasible that routine and continuous record access will become the clinical and social norm </li></ul><ul><li>Those records have to be accurate and contemporaneous and both human & machine readable in order to be citizen controlled and able to be linked to knowledge sources and decision support </li></ul><ul><ul><li>SNOMED CT supports the patient and clinician </li></ul></ul><ul><li>SNOMED CT is fundamentally about enabling patients and clinicians to describe an individual’s health care experience in their record as accurately and completely as necessary to enable human and machine readability </li></ul>
    20. 21. The Nature of Standards
    21. 22. Why are standards important? <ul><li>Standards are a fundamental building block for the economy and society </li></ul><ul><li>Standards have always been key to manufacturing and trade </li></ul><ul><li>Standards are increasingly applied to management, services, health, safety and the environment </li></ul><ul><li>Help disseminate technologies and best practice. </li></ul><ul><li>Contribute to economic performance [e.g. About 1% of annual growth may be from standards based activity]. </li></ul><ul><li>Define key features of business concerned with product or service performance, safety, reliability and quality. </li></ul><ul><ul><ul><li>Ref: National Standardisation Strategic Framework; DTI,CBI, & BSI </li></ul></ul></ul>
    22. 23. Why are Information Standards important? <ul><li>They enable interoperability between computers and organisations and services </li></ul><ul><li>Cost saving potential : Save as much as 5% of total healthcare costs: [Up to $100 Billion per year in USA] </li></ul><ul><ul><ul><li>Source - Walker J et al., Market Watch 2005:19th January;10-18 </li></ul></ul></ul><ul><li>Safety : they may potentially reduce data transcription and migration errors </li></ul><ul><li>Enable value added new activities like knowledge and decision support </li></ul>
    23. 24. Information Standards: Summary <ul><li>The benefits from information standards only accrue from appropriate and effective implementation </li></ul><ul><li>There are synergies for standards developers to work together on and share </li></ul><ul><li>Implementation has technical, organisational and user dimensions </li></ul><ul><li>Attention to acknowledging these dimensions in current information standards activities could be improved in standards development organisations </li></ul><ul><li>A global ownership and commitment to standards that can be effectively implemented should be encouraged </li></ul><ul><ul><li>‘ An Information Standard when implemented is for life not just for Christmas’ </li></ul></ul>
    24. 25. The nature of standards: Perspective <ul><li>Stakeholders want greater focus on implementation from SDOs </li></ul><ul><li>The practical aspects of the information standards life cycle management is an emergent phenomenon </li></ul><ul><ul><li>The IHTSDO will be more focused on implementation and the full Information Standards lifecycle </li></ul></ul><ul><ul><li>The IHTSDO wants to work with other SDO’s to improve understanding and conformance with the best practices for information standard life cycle </li></ul></ul>
    25. 26. Primary and Secondary uses of data
    26. 27. Concerns over data quality, utility & cost <ul><li>Cost: </li></ul><ul><ul><li>Releasing Resources to the Front Line: An Independent Review of Public Sector Efficiency P.Gershon 2004 </li></ul></ul><ul><li>Fitness for Purpose; managerial data for clinical care: </li></ul><ul><ul><li>The i-Lab project Evaluation Report. RCP September 2006 </li></ul></ul><ul><li>Quality: Numerous academic, external, and internal reports </li></ul><ul><li>Value for money: Staff spent 25% of their time collecting data and using information; 1996/97. This means information can consume 15% of running costs </li></ul><ul><ul><li>Comparing Notes; A Study of Information Management in Community Trusts. Audit Commission 1997 </li></ul></ul>
    27. 28. Clinicians & providers will be judged by data <ul><li>Does the clinical data reflect the nature of care or the information practice or the data standard or all three? </li></ul><ul><li>Poor information practice will involve: </li></ul><ul><ul><li>Poor individual use (human) </li></ul></ul><ul><ul><li>Poor organisational implementation </li></ul></ul><ul><ul><li>Poor incorporation into applications </li></ul></ul><ul><li>Poor data standards : </li></ul><ul><ul><li>Data standard not designed for purpose eg they may be sufficient and necessary for organisational decisions about populations but not individual care </li></ul></ul><ul><ul><li>Appropriate data standard but of poor quality ie not fit for purpose </li></ul></ul>
    28. 29. Data standards: Perspective <ul><li>Data transcription by humans to derive managerial data from patient data is costly and burdensome </li></ul><ul><li>Using data standards designed for managerial purposes for patient care may be inefficient, ineffective and increase patient risk </li></ul><ul><li>Mappings and other computer readable mechanisms for obtaining management data from patient data will be increasingly needed nationally and internationally </li></ul><ul><ul><li>The IHTSDO has strategic intent and active work plan internationally to create mappings from SNOMED CT [a patient care focussed standard] to statistical, managerial and other policy focused data standards eg classifications and groupings </li></ul></ul><ul><ul><li>There is a strong organisational focus on quality improvement </li></ul></ul>
    29. 30. Clinical Community
    30. 31. SAFETY: similar concerns in all global partners <ul><li>Adverse events in hospitals </li></ul><ul><li>10.8% of patients on medical wards experience an adverse event 46% of which were judged to be preventable </li></ul><ul><li>One third led to greater morbidity or death </li></ul><ul><li>Each event leads to an average of 8.5 additional days in hospital </li></ul><ul><li>If the data from a sample of trusts are representative and extrapolated across the NHS, this costs the NHS £1.1 billion each year </li></ul><ul><li>12% of adverse events were related to medicines use </li></ul><ul><li>Source: British Medical Journal, 2001; 322:517-519 </li></ul>
    31. 32. Patient Safety and Information Standards INFORMATION STANDARD Integrated into Computer systems Deployed in Organisations Used by staff and patients
    32. 33. Patient Safety and Information Standards SNOMED CT Integrated into Computer systems Deployed in Organisations Used by staff and patients Clinical Risk and Safety is a ‘Community of Practice’ responsibility Other Information standards
    33. 34. Clinical Community: Perspective <ul><li>The clinical community is poorly advanced at a inter-profession [team], intra-profession and intra discipline/specialty level in health record and communication practice standards </li></ul><ul><li>There are no profession approved maintained international standards in the area of record keeping and limited detailed national ones </li></ul><ul><ul><li>The IHTSDO will develop a ‘Community of Practice’ event on an annual basis. Clinical risk and safety is an important component </li></ul></ul><ul><ul><li>Should any National or International professional record keeping standards emerge the IHTSDO will endeavour to make any SNOMED CT implications conformant </li></ul></ul><ul><ul><li>SNOMED CT is part of the solution to data quality </li></ul></ul>
    34. 36. THE END
    35. 37. Referenced material <ul><li>The materials following this slide were not presented and are included for reference </li></ul>
    36. 38. Patients and Citizens
    37. 39. IOM report: Crossing the Quality Chasm: A new Health System for the twenty first millennium. 2.     Customisation based on patient needs and values. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences. 3.     The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over the health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision-making.   4.     Shared knowledge and the free flow of information . Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information .  
    38. 40. Patient continuous access to their health data <ul><li>Fewer repercussions from adverse events? Research has shown patients need </li></ul><ul><ul><li>Patients need a disclosure, </li></ul></ul><ul><ul><li>An apology </li></ul></ul><ul><ul><li>Information about what happened </li></ul></ul><ul><ul><li>Information on how its occurrence can be prevented in future </li></ul></ul><ul><ul><li>[NB By definition they have 1 &3 by having their record] </li></ul></ul><ul><ul><ul><li>Duclos CW et al Int Journal for Quality in Health Care 2005; 17(6):479-486 </li></ul></ul></ul><ul><li>‘ Patient responses to medical errors depend on the timeliness and quality of the physicians communication about the event’ </li></ul><ul><ul><li>[NB By definition the timeliness will be short by having their record] </li></ul></ul><ul><ul><ul><li>McNamara et al Health Policy & Planning: March 2006 21(2):101-109 </li></ul></ul></ul>
    39. 41. Patient continuous access to their health data <ul><li>DATA QUALITY MAY IMPROVE </li></ul><ul><li>50 patients given full copies of their GP record to correct: 31 patients did so. </li></ul><ul><li>10 out of 31 patients, 32% underlined a part of their record as incorrect. The origin of data error was investigated </li></ul><ul><ul><li>3 out of the 10 errors, 30% were attributed to manual data transcription error </li></ul></ul><ul><ul><li>2 out of the 10 errors, 20% were attributed to poor data entry </li></ul></ul><ul><ul><li>1 out of the 10 errors, 10% could have been attributed to either i) manual data transcription or ii) poor data entry. </li></ul></ul><ul><li>4 out of the 10 errors, 40% were attributed to other factors. </li></ul><ul><ul><li>Fitton R, The Joy Project National Patient Safety Agency 2006 </li></ul></ul>
    40. 42. Patient continuous access to their health data <ul><li>PATIENT EXPERIENCE MAY IMPROVE </li></ul><ul><li>Survey of 750 patients with chronic conditions in each of USA, UK, Canada, Australia, New Zealand </li></ul><ul><li>UK: 2/3 of patients not engaged in discussion about own treatment and care; 40% did not have goals of treatment made clear; 20% received conflicting information from different professionals </li></ul><ul><li>UK: 20% were victims of medical error in past 2 years, 9% with serious consequences </li></ul><ul><li>UK: 13% (US 22%) sent for duplicate tests, 1/2 have to repeat health history for different professionals, medical records not reaching consultation on time </li></ul><ul><ul><ul><li>Health Affairs, May 2003 </li></ul></ul></ul>
    41. 43. The Nature of Standards
    42. 44. How do the international community view standards? <ul><li>Standards have two different theoretical bases: </li></ul><ul><ul><li>Document agreed by consensus describing the properties of a good at national and/or international level </li></ul></ul><ul><ul><li>Qualities, measures, performance or other attributes of a good to which others should conform </li></ul></ul><ul><li>Benefits only accrue from standards when effectively implemented hence the need for empiric evidence for fitness for purpose and conformance criteria </li></ul>
    43. 45. ISO Standards Lifecycle? Activities are not discrete steps Identify Need Business Definition Adopt/Adapt/Develop Test/Pilot Formal Approval Training/Education Implement Conformance Maintain/Support
    44. 46. Potential Parts of an Information Standard of the Future Requirement Specification Organisational I.G. Technical I.G. Clinical/User I.G. Conformance Criteria Conformance Criteria Conformance Criteria
    45. 47. Primary and Secondary uses of data
    46. 48. Letter Imperfect: <ul><li>Incorrect use of data standards designed for secondary use for primary patient care and poor information practice </li></ul><ul><ul><li>Critical Flaws in computer generated letters from A/E to GP </li></ul></ul><ul><ul><li>Incomplete or misleading information in 29% </li></ul></ul><ul><ul><li>Inaccurate or misleading diagnoses were biggest issue at 46% </li></ul></ul><ul><ul><li>Missing information essential to FU was the second biggest issue at 22% </li></ul></ul><ul><ul><ul><li>Emergency Medicine 5/2003 </li></ul></ul></ul>
    47. 49. Clinical Community
    48. 50. Recording Practice: Definition of Myocardial Infarction <ul><li>A simple challenge to the science of medicine and/or professional consensus and/or organisation? </li></ul><ul><li>WHO definition [1994] </li></ul><ul><ul><li>2 from 3 of </li></ul></ul><ul><ul><ul><li>Chest pain; Q waves on ECG; rise of CK >x2 </li></ul></ul></ul><ul><li>ESC & ACC definition [2000] </li></ul><ul><ul><li>A + B [one of] </li></ul></ul><ul><ul><ul><li>A] Raised level of troponins or CK myocardial B fraction </li></ul></ul></ul><ul><ul><ul><li>B] Ischaemic symptoms; ECG changes consistent with ischaemia or infarction; coronary intervention </li></ul></ul></ul>
    49. 51. Definition of Myocardial Infarction <ul><li>Survey 1000 GM and cardiologists [38%] </li></ul><ul><li>Standard definitions plus raised markers alone </li></ul><ul><ul><li>WHO 163 [45%] </li></ul></ul><ul><ul><li>ESC/ACC 158 [44%] </li></ul></ul><ul><ul><li>Markers alone 22 [6%] </li></ul></ul><ul><li>‘ The wide variety of definitions used will result in patients being given different diagnoses, with implications beyond their immediate management’ </li></ul><ul><ul><ul><li>British Journal of Cardiology 2004: 11: 34-8 </li></ul></ul></ul>
    50. 52. Recording Practice: Decision Support: Prescribing <ul><li>Automated Quality Checks on Repeat Prescribing in primary care UK in 3 general practices for four months </li></ul><ul><li>Gold standard for knowledge; BNF all prescribing had to have an indication </li></ul><ul><ul><li>14.8% prescriptions had no indication </li></ul></ul><ul><ul><li>62% of alerts were incorrect;44% due idiosyncratic coding; 43% because of missing mapping between indication to Read Code in knowledge base </li></ul></ul><ul><li>Conclusions </li></ul><ul><ul><li>More consistent data collection across multiple sites </li></ul></ul><ul><ul><li>Reconciliation of clinicians willingness to infer clinical diagnoses and the machine’s inability to do the same </li></ul></ul><ul><ul><ul><li>Rogers et al Brit J of Gen Pract 2003; 53: 838-834 </li></ul></ul></ul>
    51. 53. Recording Practice <ul><li>DISEASE REGISTERS PRIMARY CARE: DIABETES </li></ul><ul><li>Marked variation in code groupings 9 in 17 practices </li></ul><ul><li>Marked variation in individual codes 25 in 17 practices </li></ul><ul><li>C10 DM used in all practices but only in 14-98% of diabetics </li></ul><ul><li>Marked variation in detail 45% had DM type coded; 21% retina exam coded </li></ul><ul><ul><ul><li>Gray et al BMJ 2003; 326: 1130-2 </li></ul></ul></ul>
    52. 54. Recording Practice <ul><li>Harold Shipman’s Clinical Governance errors included </li></ul><ul><ul><li>Incorrect completion of the GP records </li></ul></ul><ul><ul><li>Incorrect completion of death certificates  </li></ul></ul><ul><ul><li>Incorrect completion of cremation forms  </li></ul></ul><ul><ul><li>Incorrect communication of clinical details to GPs </li></ul></ul><ul><li>Systematic review of quality of data in records </li></ul><ul><ul><li>4589 articles; 174 classified; 52 met inclusion criteria </li></ul></ul><ul><ul><li>Lack of standardised assessment of quality of data in electronic records makes it difficult to compare results </li></ul></ul><ul><ul><ul><li>Thiru K, et al BMJ 2003:326:1070-2 </li></ul></ul></ul>
    53. 55. “ Looking Under the Lamp Post”. <ul><li>“ The lamps illuminating such areas as software people-management, software maintainability, portability, robustness and user friendliness have been relatively faint. As a result, these areas have been frequently neglected in software project planning and management”. </li></ul><ul><ul><li>The Principles of Software Engineering Management : Tom Gilb </li></ul></ul><ul><ul><li>ADDISON-WESLEY PUBLISHING ISBN 0-201 –19246-2 </li></ul></ul>