informatics and information governance – not just doing no harm, but proving it

Uni Manchester – Information Governance 23/11/05

Informatics and Information Governance – not just doing no

harm, but proving it

Jean Roberts

[email protected]


How might you prove it in aspects of Informatics?

• Information Technologies

• Information Management

• Systems and Applications

• Communications technologies

• Information – data quality to privacy techniques


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)


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!


Dimensions of Informatics

• People -- context and content

• Systems – robust, fit for purpose, built to withstand contingencies, failsafe– Hardware– Software

• Processes – practical, consistent, future-proofed


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


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


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


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?


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


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?


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


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


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


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


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


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?


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?


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


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?


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


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


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


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


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!


SQUARE ONION : AUDIT CUBE

Reference : GLC RAINBOW series


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 successRISKS• 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


OUTLINE : AUDIT TO PROVE GOVERNANCE

PROXY INDICATORS

TACTICS & ACT IONS

SPECIFIC (LOCAL) TARGET S

AIM S, OBJECTIVES, GOALS

M ISSION / V IS ION STATEM ENT

described by

monitor

inform STANDARDS

AUDIT PROCESS

GUIDANCE / BENCHMARKS

inform

CRITERIA FOR SUCCESSdefine

contains

addressed by

measured by

Q : WHY SHOULD TARGETS BE LOCAL?


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


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


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?


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

informatics and information governance – not just doing no harm, but proving it

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