Informatics and Information Governance

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

• Jean Roberts
• Jean_at_hcjean.demon.co.uk

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How might you prove it in aspects of Informatics?

• Information Technologies
• Information Management
• Systems and Applications
• Communications technologies
• Information data quality to privacy techniques

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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)

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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!

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Dimensions of Informatics

• People -- context and content
• Systems robust, fit for purpose, built to
  withstand contingencies, failsafe
• Hardware
• Software
• Processes practical, consistent, future-proofed

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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

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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

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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

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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?

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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

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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?

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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

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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

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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

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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

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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/gover
  nance www.nhsia.nhs.uk

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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?

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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?

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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

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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?

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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

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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

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Information Uses
Aggregated De-personalised
STRATEGIC Potential demand, siting new
facilities, bidding for funds
TACTICAL available beds or units of vaccine
OPERATIONAL Freds pills or Gladys operation
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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

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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!

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SQUARE ONION AUDIT CUBE
Reference GLC RAINBOW series
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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

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OUTLINE AUDIT TO PROVE GOVERNANCE
GUIDANCE / BENCHMARKS
contains
inform
described by
STANDARDS
inform
addressed by
AUDIT PROCESS
monitor
measured by
CRITERIA FOR SUCCESS
define
Q WHY SHOULD TARGETS BE LOCAL?
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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

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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

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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?
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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