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Informatics and Information Governance – not just doing no harm, but proving it

Informatics and Information Governance – not just doing no harm, but proving it. Jean Roberts Jean@hcjean.demon.co.uk. How might you prove it in aspects of Informatics?. Information Technologies Information Management Systems and Applications Communications technologies

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Informatics and Information Governance – not just doing no harm, but proving it

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  1. Informatics and Information Governance – not just doing no harm, but proving it Jean Roberts Jean@hcjean.demon.co.uk Uni Manchester – Information Governance 23/11/05

  2. How might you prove it in aspects of Informatics? • Information Technologies • Information Management • Systems and Applications • Communications technologies • Information – data quality to privacy techniques Uni Manchester – Information Governance 23/11/05

  3. DEFINITIONS • DOMAIN : Health informatics is concerned with the systematic processing of data, information and knowledge in medicine and healthcare. The domain covers computational and informational aspects of processes and structures, applicable to any clinical or managerial discipline within the health sector whether on a tele (remote) basis or not. Health informatics is delivered by operational health practitioners, academic researchers and educators, scientists and technologists in operational, commercial and academic domains (medinfo2001, IMIA) • SCOPE : the knowledge, skills and tools that enable information to be collected, managed, used and shared to support the delivery of healthcare and to promote health [and wellbeing] (UKCHIP, 2003) • STUDY AREA : nature and principles of information and its applications within all aspects of healthcare delivery and promotion (PROTTI, D 2000) Uni Manchester – Information Governance 23/11/05

  4. The Real Problem • Patients are being damaged by bad health informatics • Patient care is increasingly impacted by informatics • Informatics can play a powerful positive role • It WILL make a difference! Uni Manchester – Information Governance 23/11/05

  5. People -- context and content Systems – robust, fit for purpose, built to withstand contingencies, failsafe Hardware Software Processes – practical, consistent, future-proofed Dimensions of Informatics Uni Manchester – Information Governance 23/11/05

  6. Problems for the profession / practitioner • The need for a career pathway • The need for adequate recognition • Professional Credibility • Appropriate Remuneration • Correct Workplace Setting • The need for a professional “home” • Need to generate an identity and maturity • Need for synergy and inclusivity Uni Manchester – Information Governance 23/11/05

  7. Ethics of a professional (in HI) • development of a strong Code (of Ethics / Conduct) • establishment of standards of professionalism that will set you ‘apart from the crowd’ • provision of information for organisations and employers by ethics experts in HI • circulation of case studies and other information to keep the importance of ethical conduct highly visible to all members of the profession and the public Uni Manchester – Information Governance 23/11/05

  8. What does a ‘good’ intervention look like? • Hippocrates stated ‘interventions that do no harm’ … prevent harm …. promote good • short term pain for long term positive outcome • indirect harm (e.g. social, educational, image etc ..) • negligence, defensible or defensive medicine? • ‘When will it be negligent for a GP not to use computer-based protocols & guidelines Uni Manchester – Information Governance 23/11/05

  9. Scenario – YOU DECIDE ! • Female, early 20s, temporary blindness • no physical findings • wants to recommend ophthalmologist for detailed investigation • could be precursor of MS • ??should Dr tell? ??might she find out? ??could she turn to alternative therapies?What should be recorded / shared? Uni Manchester – Information Governance 23/11/05

  10. Legal (& other) aspects • Common law / duty of confidence • Caldicott (77) • Computer Misuse Act (90) • Access to Health Records (90) • Data Protection (98) • Human Rights (98) • Freedom of Information (00) • Health & Social Care Act (01) • Electronic Comms Act (00) • GP – NHS GMS Contract regs (04) • NHS Information Governance Toolkit Uni Manchester – Information Governance 23/11/05

  11. Who owns the data? • Paper-based • case notes • Jottings • Computerised • individual person-based records • specialist (research) files • Letters to GP / letters from GP • Jottings of a professional • ?Depends on who owns the server? Uni Manchester – Information Governance 23/11/05

  12. Who decides what can be seen by whom? • Trust / Consultant in charge / Ward manager • PCT / GP / Practice manager • Subject of the record • Guardian of the subject • The Courts • Check out local PUBLICATIONS SCHEME viz Freedom of Information Uni Manchester – Information Governance 23/11/05

  13. Freedom of Information Act • Public right of access (Jan 2005) • All is discoverable / subject already to ‘Publications scheme’ • Independent practitioners / public bodies –previously different models of FoI : not now! • Cannot ask or judge on why you want the data • Sanctions - if non-compliant can ‘request’ OR FORMALLY ENFORCE (20 day response) • CAUTION : report objectively; keep Master Copy ONLY; file emails • www.informationcommissioner.gov.uk • Check out NHS FOI website : www.nhsia.nhs.uk Uni Manchester – Information Governance 23/11/05

  14. A clear open approach to Governance • Open and visible observance of ethical responsibilities • Clear understanding of who is responsible for what and why • Clarity of legal and ethical responsibilities on behalf of patients, colleagues and employing organisation • Processes are understandable and logical and transparent Uni Manchester – Information Governance 23/11/05

  15. Ethical Code - rationale • To protect the professional • To guide the professional • To inform the subject (patient / client) • Related HI-specific issues • electronic records • decision support • sensitivity of content Uni Manchester – Information Governance 23/11/05

  16. Trust is key • Based upon: • Robust attitudes to ethics • Strict observance of law • Prevention of abuse and mis-use • Facilitation of unexpected need • Ability to audit adherence to standards • Mutually acceptable governance framework • Look on Governance websiteswww.npfit.nhs.uk/governance www.nhsia.nhs.uk Uni Manchester – Information Governance 23/11/05

  17. Proving good governance : Probity of Use – National Care Records • Clear processes for inter-organisational records • Engagement of Clinical Users • Established forum for Design and Evolution of systems • Environment of Trust nurtured (Users & Providers) • Recognised problems of federated / shareable systems • Understanding of basis for Procurement • Reflect on relevance to Current Procurement Strategy? Uni Manchester – Information Governance 23/11/05

  18. EXERCISE : Scenario • 18 year old male with bronchial asthma • hospitalised 4 times in last 6/12 • needs potent medication with long term implications to control condition • found still to be a smoker (‘peer group pressure’) • TREAT or NOT TREAT • what should be recorded? Uni Manchester – Information Governance 23/11/05

  19. Patient / Client Informed Consent • Just because you signed the form • do you know what the procedure is and any alternatives • do you understand the diagnosis (or as much of it as you want to know) and the prognosis • are you clear about risks • were your views re-checked periodically • is your consent documented in the records • If the answer to (any of) the above is No then your consent may not be legal Uni Manchester – Information Governance 23/11/05

  20. Consent must be ‘fit for purpose’ • in language that the subject understands • given by a subject that is competent to consent • for explicit purposes, not just ‘do what you need to’ • not given under duress • When might the conditions for apparent agreement be questionable? Uni Manchester – Information Governance 23/11/05

  21. Ethical dilemmas - written material • 8-point font • technical or clinical jargon, perhaps Greek • form of English • verbal • gender-biased • and on the web, there are even more criteria, e.g. disability checks • look at www.hon.org and DISCERN • Check out work of Angela Coulter & Muir Gray Uni Manchester – Information Governance 23/11/05

  22. Underpinning Ethics and Confidentiality • Codes of Conduct • Induction processes • Training needs analysis • Risk assessment and management • Info. security & access permission vectors • Physical security • Exchange of person-identifiable data • Information quality Uni Manchester – Information Governance 23/11/05

  23. Information Uses Aggregated De-personalised STRATEGIC : Potential demand, siting new facilities, bidding for funds TACTICAL :available beds or units of vaccine OPERATIONAL : Fred’s pills or Gladys’ operation Uni Manchester – Information Governance 23/11/05

  24. Same Information / Different Purposes • patient & client records / staff records • monitoring & audit / quality control of facilities • projecting demands & future plans • development of costings • management of service provision • statistical reporting • complaints & legal issues • research, EDT • National Registries Uni Manchester – Information Governance 23/11/05

  25. Audit – an outline • Can cover many functional areas of the health domain • clinical, professional, management, financial, organisational • Can look at many aspects • Outcomes, behaviour, knowledge and skills, perceptions, beliefs, attitudes, issues / catalysts & inhibitors • Can be a profession looking at itself, a multi-disciplinary team looking at a burning issue • Inside / outside; routine /ad hoc; patient, population or public ACTIONS • Set baseline and agree goalposts • Agree data to be analysed • Allocate tasks within team • Test the process, review outcomes and sign off • Do audit, review, reflect, change : embed in practice – NO BLAME! Uni Manchester – Information Governance 23/11/05

  26. SQUARE ONION : AUDIT CUBE Reference : GLC RAINBOW series Uni Manchester – Information Governance 23/11/05

  27. WHAT AUDIT NEEDS • Shared vision and purpose • Committed participants and informed others • Clear remit, targets, processes and responsibilities • Recognised priority and authority • Defined criteria for success RISKS • Unclear specification and unspecified goalposts & CSFs • Uncommitted or pig-headed participants ‘we have always done it this way’ • Alienated groups • Demotivation because efforts go to waste and necessary changes not made • Audit is ‘done to you’ not an integral part of confirming good practice Uni Manchester – Information Governance 23/11/05

  28. OUTLINE : AUDIT TO PROVE GOVERNANCE GUIDANCE / BENCHMARKS contains inform described by STANDARDS inform addressed by AUDIT PROCESS monitor measured by CRITERIA FOR SUCCESS define Uni Manchester – Information Governance 23/11/05 Q : WHY SHOULD TARGETS BE LOCAL?

  29. The views of the individual CAN be over-ruled • HARD CHOICE - Private concerns against Public good • If circumstances put you at serious risk • If the whole clinical team concurs • If Section 60 applies (greater good) • Not just if you might be distressed by hearing the consequences of the intervention • You can opt not to be told about your condition Uni Manchester – Information Governance 23/11/05

  30. Sticky issues - ethics come into the equation • Life threatening situations • Genetic engineering / genotyping • Reproductive selection / genetic predispositions • Medical research • Long-term care situations • ‘Life to years’ or ‘Years to life’ • Mental health situations • Making decisions for and about Children • Respecting patient choice : dying with dignity Uni Manchester – Information Governance 23/11/05

  31. Dilemma? When should the impact of ‘doing nothing’ be explained and how much risk information should be communicated? How should the HI system support the proving of what you said and how it was received? Uni Manchester – Information Governance 23/11/05

  32. Where to draw the line / where can HI help? • Recall only 50% of what you are told • Recall less that you read than you see diagrammatically • Retain only 60% of that after 1 month anyway • Recognise that information on web and paper can help or hinder Uni Manchester – Information Governance 23/11/05

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