Uni Manchester – Information Governance 23/11/05 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 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 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 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 Dimensions of Informatics People -- context and content Systems – robust, fit for purpose, built to withstand contingencies, failsafe –Hardware –Software Processes – practical, consistent, future- proofed
Uni Manchester – Information Governance 23/11/05 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 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 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 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 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 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 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 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 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 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 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 websites www.npfit.nhs.uk/governance www.nhsia.nhs.uk
Uni Manchester – Information Governance 23/11/05 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 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 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 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 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 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 Information Uses OPERATIONAL : Fred’s pills or Gladys’ operation TACTICAL : available beds or units of vaccine STRATEGIC : Potential demand, siting new facilities, bidding for funds Aggregated De-personalised
Uni Manchester – Information Governance 23/11/05 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 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 SQUARE ONION : AUDIT CUBE Reference : GLC RAINBOW series
Uni Manchester – Information Governance 23/11/05 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 OUTLINE : AUDIT TO PROVE GOVERNANCE described by monitor inform STANDARDS AUDIT PROCESS GUIDANCE / BENCHMARKS inform CRITERIA FOR SUCCESS define contains addressed by measured by Q : WHY SHOULD TARGETS BE LOCAL?
Uni Manchester – Information Governance 23/11/05 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 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 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 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