From professional standards to information standards

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Anne Casey RN MSc FRCN
Editor, Paediatric Nursing
Royal College of Nursing Adviser on Information Standards
Clinical Domain Lead, NHS Information Standards Board for Health and Social Care
(17/10/08, Plenary session 2)

Published in: Health & Medicine, Technology
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  • From professional standards to information standards

    1. 1. From professional standards to information standards Anne Casey RN MSc FRCN Editor, Paediatric Nursing, RCN Adviser on Information Standards Clinical Domain Lead, NHS (England) Information Standards Board for Health and Social Care Member, Content Committee, International Health Terminology Standards Development Organisation (IHTSDO) Member, CEN TC251 WG2 and ISO TC215 WG3
    2. 2. Acknowledgement <ul><li>Martin Severs FRCP FFPHM OBE </li></ul><ul><li>Professor of Health Care for Older People and Associate Dean [Clinical Practice], School of Health Sciences and Social Work, Portsmouth </li></ul><ul><li>Chairman, NHS (England) Information Standards Board for Health and Social Care </li></ul><ul><li>Chairman, International Health Terminology Standards Organisation </li></ul>
    3. 3. Themes <ul><li>Professional standards and information standards </li></ul><ul><li>Consensus V Evidence based approaches </li></ul><ul><ul><li>Information standards and systems </li></ul></ul><ul><li>Project management V Lifecycle management </li></ul><ul><ul><li>Information standards and systems </li></ul></ul><ul><li>Leadership and collaboration V </li></ul><ul><li>Authority and mandation </li></ul>
    4. 4. Professional standards & information standards Professional record standards and audit data standards which are REQUIREMENT on Professional practice standards and guidelines are REQUIREMENT for Information standards & applications
    5. 5. <ul><li>… specify requirements for applications, interface design, other information standards (e.g. data standards, messages) etc </li></ul><ul><li>… .are inputs to human, organisational and technical guidance for use of systems, other information standards etc </li></ul><ul><li>… .provide criteria for quality assurance / review of same </li></ul>Professional record standards ….
    6. 6. Information Standards <ul><li>Objective: </li></ul><ul><li>to achieve compatibility and interoperability between independent systems [ISO/TC 215] </li></ul><ul><li>In support of safe, effective and efficient healthcare </li></ul>
    7. 7. NHS Information Standards <ul><li>Information practice standards (Behaviours) </li></ul><ul><ul><li>e.g. communicating with patients; communication between professionals; text messaging; safe use of kit </li></ul></ul><ul><li>‘ Technical’ standards </li></ul><ul><ul><li>e.g. network; interface; kit that knows when its been cleaned </li></ul></ul><ul><li>Information governance standards </li></ul><ul><ul><li>e.g. information sharing protocols; security </li></ul></ul><ul><li>Content standards </li></ul><ul><ul><li>e.g. record structures; messages; terminology; ‘machine ready’ artefacts </li></ul></ul>
    8. 8. <ul><li>For patients admitted for head injury observation, the minimum acceptable documented neurological observations are: </li></ul><ul><ul><li>Glasgow Coma Score </li></ul></ul><ul><ul><li>pupil size and reactivity </li></ul></ul><ul><ul><li>limb movements </li></ul></ul><ul><ul><li>respiratory rate </li></ul></ul><ul><ul><li>heart rate </li></ul></ul><ul><ul><li>blood pressure </li></ul></ul><ul><ul><li>temperature </li></ul></ul><ul><ul><li>blood oxygen saturation. </li></ul></ul>
    9. 9. ‘ machine ready’ artefacts <ul><li>Standard representation of Glasgow coma scale </li></ul><ul><ul><li>– The professional task </li></ul></ul><ul><ul><ul><li>Which version(s)? </li></ul></ul></ul><ul><ul><ul><li>IPR / ownership; updating </li></ul></ul></ul><ul><ul><li>The technical task </li></ul></ul><ul><ul><ul><li>SNOMEDised </li></ul></ul></ul><ul><ul><ul><li>Maintained and distributed </li></ul></ul></ul>
    10. 10. Development and maintenance Professional record standard Requirement Precise definition PROFESSION PROFESSION & CFH / IC CONNECTING FOR HEALTH & INFORMATION CENTRE Information standard Maintenance & version control Maintenance & version control Implementation and migration Close collaboration & good management * REPOSITORY
    11. 11. Information Standards Board Role and Scope <ul><li>Assurance and approval (and withdrawal) of information standards for use in the NHS in England and in its communications with other sectors </li></ul><ul><li>Independent; Accountable to the NHS Chief Executive </li></ul><ul><li>Working with Local Government and the Department for Children, Schools and Families </li></ul><ul><li>UK and International standards harmonisation </li></ul>
    12. 12. Appraisal of Information Standards <ul><li>Appraised by panels of ‘experts’: clinical, management, technical, social care and public health & statistics </li></ul><ul><li>Evidence from implementation that the proposed standard is implementable, interoperable, safe and fit for purpose </li></ul><ul><li>Standard specification AND human, organisational, technical guidance </li></ul><ul><li>Base criteria: Department of Health or Connecting for Health sponsorship and funding for the standard’s lifecycle, including implementation and conformance testing. </li></ul>
    13. 13. Leadership and Authority <ul><li>Collaborators </li></ul><ul><ul><li>Professional / specialty organisations </li></ul></ul><ul><ul><li>Patient groups </li></ul></ul><ul><ul><li>DH professional leads </li></ul></ul><ul><ul><li>Suppliers </li></ul></ul><ul><li>Mandators </li></ul><ul><ul><li>Professional regulators </li></ul></ul><ul><ul><li>Patient Information Advisory Group </li></ul></ul><ul><ul><li>Inspectorate </li></ul></ul><ul><ul><li>Chief architect </li></ul></ul><ul><ul><li>[CIOs] </li></ul></ul>
    14. 14. Evidence and Lifecycle approach for applications as well as standards <ul><li>eHealth innovation should be seen in the same light as any other healthcare innovation </li></ul><ul><li>i.e. </li></ul><ul><ul><li>Evidence based </li></ul></ul><ul><ul><li>Risk managed </li></ul></ul><ul><ul><li>Maintained and updated. </li></ul></ul>
    15. 15. Some examples & Some issues <ul><li>Safer patient identifiers – wristband </li></ul><ul><li>Clinical imaging procedures subset </li></ul><ul><li>National renal dataset </li></ul><ul><li>Consent </li></ul><ul><li>Safety risk management and </li></ul><ul><li>health software </li></ul><ul><li>Evidence </li></ul><ul><li>Governance </li></ul><ul><li>Repository </li></ul><ul><li>Architecture </li></ul><ul><li>Globalisation </li></ul>
    16. 17. Evidence for choice of identifiers <ul><li>Extensive NPSA work for ‘ Right Patient, Right Blood ’ guidance </li></ul><ul><li>Review report: Design and specification of patient wristbands </li></ul><ul><ul><li>Evidence from existing literature, NPSA-facilitated workshops, and NHS Trusts survey </li></ul></ul><ul><li>Patient and public workshop report </li></ul><ul><ul><li>‘ A surprising number of participants had experienced problems of erroneous identification in hospital. One man discovered, while waiting to go to the theatre for an angiogram, that he was wearing another patient’s wristband’. </li></ul></ul><ul><li>www.npsa.nhs.uk/nrls/alerts-and-directives/notices/wristbands/ </li></ul>
    17. 18. Information Standard <ul><li>By 18 July 2009, all NHS organisations in England and Wales that use patient wristbands should: </li></ul><ul><li>Generate and print all patient wristbands </li></ul><ul><li>from the hospital demographic system </li></ul><ul><li>..using the Four standard identifiers </li></ul><ul><li>..in the style recommended by the </li></ul><ul><li>NHS Connecting for Health </li></ul><ul><li>common user interface design guide </li></ul>
    18. 19. Evidence for approval of the information standard <ul><li>Safe </li></ul><ul><ul><li>previous slide (+ risk management via NPSA reporting system) </li></ul></ul><ul><li>Implementable </li></ul><ul><ul><li>Observation and survey of Trusts to assess: </li></ul></ul><ul><ul><ul><li>Need for system changes </li></ul></ul></ul><ul><ul><ul><li>Impact of change to CUI format (mandation timelines adjusted) </li></ul></ul></ul><ul><ul><ul><li>Availability of NHS number </li></ul></ul></ul><ul><li>Interoperable </li></ul><ul><ul><li>With other standards (CUI display, NHS number) </li></ul></ul><ul><ul><li>With existing clinical processes (NPSA best practice guidance) </li></ul></ul>
    19. 20. Standard Descriptions for Clinical Imaging Procedures <ul><li>Purpose: consistent description of imaging procedures to facilitate: </li></ul><ul><ul><li>identification of images undertaken in an imaging examination </li></ul></ul><ul><ul><li>communication of clinical information associated with the identified procedures such as imaging service requests, patient imaging reports, statistical measures of activity </li></ul></ul><ul><li>For use in PACS systems now; fully aligned with SNOMED CT (released with SCT updates) </li></ul>
    20. 21. Governance <ul><li>Joint sponsorship: </li></ul><ul><ul><li>Dr Erika Denton, Consultant Radiologist, National Clinical Lead for Diagnostic Imaging, Department of Health </li></ul></ul><ul><ul><li>Paul Jones, Chief Technical Officer, NHS Connecting for Health </li></ul></ul><ul><li>Joint development </li></ul><ul><ul><li>editorial responsibility for the content: the Clinical Imaging Procedures Management Group which includes representatives of all key stakeholders </li></ul></ul><ul><ul><li>technical aspects (SNOMED CT subset maintenance): Terminology Service of the Technology Office of NHS Connecting for Health </li></ul></ul>
    21. 22. National Renal Dataset <ul><li>Policy driver: Department of Health’s National Service Framework for Renal Services </li></ul><ul><li>The data will be used by: </li></ul><ul><ul><li>DH to monitor performance against the framework targets </li></ul></ul><ul><ul><li>UK Renal Registry and UK Transplant to audit NHS secondary care organisations </li></ul></ul><ul><li>Mandated for reporting from October 2009 </li></ul><ul><li>Standard published in Data Dictionary(?) </li></ul>
    22. 23. Repository issues <ul><li>NHS (England) data dictionary comprises mainly administrative data elements </li></ul><ul><li>Renal dataset includes a number of clinical value sets – values are aligned with SNOMED CT (renal unit systems do not yet have SNOMED CT capability) </li></ul><ul><li>Should these values sets be in data dictionary? </li></ul><ul><li>How is the relationship between data dictionary values and SNOMED CT to be maintained? </li></ul>
    23. 24. CONSENT <ul><li>Request from chaplaincy services for standard field for recording patient consent to disclosure of information about religious affiliation </li></ul><ul><li>No national approach to e-recording of consent </li></ul><ul><ul><li>Inefficient </li></ul></ul><ul><ul><li>Interoperability issues </li></ul></ul>
    24. 25. <ul><li>However – hot of the press… </li></ul>
    25. 26. Unfortunately….. not much about recording consent and refusal <ul><li>Recording decisions (p22) </li></ul><ul><li>51 You must use the patient’s medical records or a consent form to record the key elements of your discussion with the patient. This should include the information you discussed, any specific requests by the patient, any written, visual or audio information given to the patient, and details of any decisions that were made. </li></ul>
    26. 27. HL7 data sharing consent elements <ul><li>Subject; </li></ul><ul><li>author(s); </li></ul><ul><li>consent directive; </li></ul><ul><li>permission to transfer; </li></ul><ul><li>record type; </li></ul><ul><li>receiver(s) </li></ul>NOTE: The Act classCode &quot;consent&quot; within HL7 may include informed consents and all similar medico-legal transactions between the patient (or the patient's delegate) and the provider for surgical procedures, informed consent for clinical trials, advanced beneficiary notice, against medical advice decline from service, release of information agreement, etc
    27. 28. DH treatment consent forms - data categories <ul><li>Parties </li></ul><ul><ul><li>patient, competent hcp, person(s) with parental responsibility, person(s) important to patient, relationship, interpreter, independent witness </li></ul></ul><ul><li>Decision </li></ul><ul><ul><li>Consent, change/withdrawal, confirmation of consent, refusal / dissent, conditions, over-ride </li></ul></ul><ul><li>Action </li></ul><ul><ul><li>E.g. procedure name and description, extra procedures that might become necessary, type of anaesthesia for the procedure </li></ul></ul><ul><li>Information exchange </li></ul><ul><ul><li>Content, media, patient concerns discussed, contact details for questions </li></ul></ul>
    28. 29. Consent & Refusal LAW PROFESSIONAL GUIDANCE RECORD informed capacity free will ongoing process consent information model record information model change; withdrawal time; expiry signatures In e-records In context of Consent Concept Model proxy implied; explicit for something to be done or not done preferences; advance directives
    29. 30. Safety risk management and health software <ul><li>Two standards under development at ISO level – main input from NHS England (we can’t wait) </li></ul><ul><ul><li>Application of patient safety risk management to the manufacture of health software </li></ul></ul><ul><ul><li>Application of patient safety risk management to the deployment and use of health software </li></ul></ul>
    30. 31. Provisions <ul><li>Infrastructure, responsibilities, processes and reporting requirements to ensure risks are assessed and managed (ongoing) </li></ul><ul><li>AND </li></ul><ul><li>Formal handover of risk management between system developer and deploying organisation. </li></ul>
    31. 32. Globalisation Activities are not discrete steps From ISO standards’ lifecycle Identify Need Business Definition Adopt / Adapt / Develop Test/Pilot Formal Approval Training/Education Implement Conformance Maintain/Support
    32. 33. Conclusions <ul><li>Professional standards are the basis for information standards (especially content standards) </li></ul><ul><ul><li>Professional organisations must step up to the plate. </li></ul></ul><ul><ul><li>Bottom-up approaches essential </li></ul></ul><ul><li>Funded, lifecycle management for Information standards and for systems </li></ul><ul><li>Evidence based approaches to standards and system development, with focus on safety and implementability </li></ul><ul><li>Leadership and collaboration as well as Authority and mandation – with evidence of value and of safety </li></ul><ul><li>to achieve the interoperability that patients and public have the right to expect. </li></ul>
    33. 34. And finally .... <ul><li>‘ Care and share’ </li></ul><ul><li>must be the focus of eHealth developments, not ‘measure and compare’ </li></ul><ul><li>(Royal College of Nursing 2008) </li></ul>

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