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From Privacy to Information Governance. Dr Petra Wilson Internet Business Solutions Group - Cisco. Historically. One-to-one relationships based on traditional medical privacy Doctor owned and controlled records Passive patients. The Changing face of Healthcare delivery in Europe.

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from privacy to information governance

From Privacy to Information Governance

Dr Petra Wilson

Internet Business Solutions Group - Cisco

slide2

Historically

  • One-to-one relationships based on traditional medical privacy
  • Doctor owned and controlled records
  • Passive patients
slide3

The Changing face of Healthcare delivery in Europe

Patients are no longer registered with individual general practitioners but registered with multi-partner practices or use walk-in centres.

GPs are no longer the sole gatekeepers to healthcare.

Wider range of healthcare delivered by nurses and pharmacists with extended roles.

Increasing numbers of healthcare professionals are seeking to work part-time.

More specialist care delivered in co-operation with GPs

The rise of the resourceful patient (the decline of the sapienitial authority of the GP) .

The rise of personal health management and health consumerism.

Significant investments in information management in healthcare.

slide5

The Current Conundrum

Doctors have a legal and ethical duty of confidentiality for all identifiable health information learnt in a professional capacity.

AND

Patients expect doctors to share relevant information appropriately, making it promptly accessible when necessary their care.

AND

If the expectation of appropriate sharing is not met patients will withhold information to the detriment of their own and other peoples’ care.

slide6

From Privacy to Data Protection

Medical Data Processing is prohibited

(Art 8 Directive 95/46/EC)

unless:

Explicit informed consent has been obtained from the data subject (article 8(2)(b)).

Or

It is in vital interests of the patient or of another person, AND the data subject is physically or legally incapable of giving consent (article 8(2)(c)).

Or

it is necessary for preventive medicine, medical diagnosis, the provision of care or treatment or the management of health-care servicesAND the personal data in question are processed by a health professional(article 8(3)).

Or

if there is a substantial public interestin the processing (article 8(4)).

slide7

Explicit and Informed consent

  • creation of medical records is a necessary and unavoidable consequence of the medical situation
  • Withholding of consent may be to the patient’s detriment.
  • All possible future users and purposes cannot be known at time of creation
slide8

Explicit and Informed consent for EHR

  • creation of medical records is a necessary and unavoidable consequence of the medical situation
  • Withholding of consent may be to the patient’s detriment.
  • All possible future users and purposes cannot be known at time of creation

CONSENT ????

slide9

Vital Interests

  • Requires: life-saving treatment in a context where patient is not able to express him- or herself.
  • Would require a construction that sees all healthcare in the vital interests of patients
slide10

Vital Interests

  • Requires: life-saving treatment in a context where patient is not able to express him- or herself.
  • Would require a construction that sees all healthcare is in the vital interests of patients

Vital Interests ?????

slide11

Preventive medicine, medical diagnosis, the provision of care or treatment or the management of health-care services

  • Must be processed by a healthcare professional
  • “required” – not merely useful
  • doubtful if this is adequate justification for collection of all medical data
slide12

Preventive medicine, medical diagnosis, the provision of care or treatment or the management of health-care services

  • Must be processed by a healthcare professional
  • “required” – not merely useful
  • doubtful if this is adequate justification for EHR creation

Required for care and treatment ??????

slide13

Public Interest

if there is a substantial public interest in the processing, special rules may be adopted

……. So what would those rules look like?

slide14

From Data Protection to Public Interest Information Governance

Data should be:

  • fairly and lawfully collected processed;
  • Collected with knowledge and agreement of data subject (implied or explicit)
  • processed for known /knowable and limited purposes;
  • accurate, adequate, relevant and not excessive;
  • not kept for longer than is necessary;
  • processed in line with data subjects’ rights of access and correction
  • securely stored and shared
slide15

Public Interest based Medical Information Governance

  • Consent
    • Implicit consent and opt-out system for general information
    • opt-in for sensitive information
    • (visible) Sealed envelopes
    • Personalised privacy rules
    • ……………………. Public Information Campaigns
slide16

Public Interest based Information Governance

  • Security and Authenticity
    • Strong authentication techniques
    • electronic signatures
    • Audit Trail
    • Appropriate annonymisation (PETs)
    • ………………. visible correction ??
slide17

Public Interest based Information Governance

  • Access
    • Role dependent authorization (inc. patient)
    • Patient defined emergency access
    • Audit trail of all access
slide18

Public Interest based Information Governance

  • Ownership and Control
    • Patient
    • Named healthcare professional
    • National Health System
    • …….. Liability, replaceability, accuracy
slide19

Public Interest based Information Governance ……Creating balance between patient confidentiality and access to patient information by healthcare professionals

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