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

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

• Jean Roberts
• Jean_at_hcjean.demon.co.uk
• Slides from various sources

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SCOPE

• the knowledge, CONTENT
• skills and COMPETENCY
• tools PRODUCTS
• that enable information to be
• collected,
• managed,
• used and
• shared to support the delivery of healthcare and
  to promote health and wellbeing
  
  (UKCHIP, 2003)

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How might you prove G in aspects of Informatics?

• Information Technologies
• Information Management
• Systems and Applications
• Communications technologies
• Information Content
• Information Handling

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Information Governance

• is a framework for handling personal information
  in a confidential and secure manner to
  appropriate ethical and quality standards in a
  modern health service

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Facets of Information Governance

• Confidentiality (duty of confidence)
• Information security (breaches)
• Privacy (respecting identity, human rights,
  ethics)
• Data Protection (principles of good practice)
• Quality assurance (audit)

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IG impacting/ impacted on ..

• Caldicott
• Confidentiality NHS Code of Practice
• Computer Misuse Act (90)
• Access to Health Records (90)
• Human Rights Act (98)
• BS7799 / ISO 17799 Information Security
  Management
• Data Protection Act 1998
• Records Management - HSC 1999/053 for the record
• Information Quality Assurance Data
  Accreditation
• Freedom of Information Act 2001
• Health and Social care Act 2001
• Electronic Communications Act 2000
• GP Contract GP GMS requirements (2004)
• Controls Assurance IMT and Records Mgt.
• Plus other standards and initiatives yet to be
  defined

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Dimensions of HI / IG
PEOPLE context and content
SYSTEMS Robust, fit for purpose, built to
withstand contingencies, failsafe
PROCESSES practical, consistent, risk averse,
future-proofed
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What if IG is not practiced ? If we do nothing?

• Confusion, fragmentation frustration
• Lack of progress
• Excess work for staff
• Litigation and expense
• Inability to set up robust flows between multiple
  systems
• Difficulties integrating systems into a seamless
  whole
• inability to produce reliable performance
  indicators

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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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EU 8 distilled to UK 5 Principles

• H eld securely confidentially
• O btained fairly and efficiently
• R ecorded accurately and reliably
• U sed effectively and ethically
• S hared appropriately and lawfully

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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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Pop-ups make thought obsolescent?
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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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The Information Governance - core Initiatives

• Caldicott
• Confidentiality and ethics
• GMC and professional regulation
• IM T Security - BS7799
• Data Protection and the Law
• Risk Management
• Data Quality Indicators

• Data Accreditation
• PRIMIS
• NHS Number Programme
• Clinical Governance
• Research Governance
• Controls Assurance
• Records Management
• Caldicott 2 Social Care

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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 of the record
• The Courts
• Check out local HA 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.connectingforhealt
  h.nhs.uk/aboutus/foi

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• 3.1.1 Under the Freedom of Information Act (2000)
  the NHS North West is required to group
  information into broad categories these are
  called classes of information. The NHS North West
  is using the following classes of information
• ? The NHS and the NHS North West
• ? Role and Responsibilities
• ? Who we are
• ? Financial and Funding Information
• ? Corporate Information
• ? Strategic Frameworks for Service Development
  across the NHS North
• West
• ? Workforce Development
• ? Performance Management of local NHS
  organisations Aims, Targets
• and Achievements
• ? Supporting Improvement
• ? How others measure us and how we measure
  ourselves
• ? Policies and Procedures
• ? Enquiries and Complaints Procedures
• ? Human Resources
• ? Press Releases and Communications with the
  Media
• ? Public Health
• ? Environmental Information

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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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Overall - 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.connectingforhealt
  h.nhs.uk/systemsandservices/infogov
• www.ic.nhs.uk/foi/applicability

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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

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Information Governance parlance

• Secondary Uses Service
• Roll-back Access Controls
• Pseudonomisation
• Dissent
• Sealed Envelopes

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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 reminder
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

• The most general definition of an audit is an
  evaluation of a person, organization, system,
  process, project or product. Audits are performed
  to ascertain the validity and reliability of
  information, and also provide an assessment of a
  system's internal control.
• The goal of an audit is to express an opinion on
  the person/organization/system etc. under
  evaluation based on work done on a test basis.
  Due to practical constraints, an audit seeks to
  provide only reasonable assurance that the
  statements are free from material error

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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 GCL 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