confidentiality & privacy in healthcare confidentiality & privacy in healthcare ethics &...
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CONFIDENTIALITY & CONFIDENTIALITY & PRIVACY IN PRIVACY IN
HEALTHCARE HEALTHCARE
Ethics & LawEthics & Law
Paquita de Zulueta. Apothecaries 2015
AIMSAIMS
Deeper understanding of the ethical and Deeper understanding of the ethical and legal principles underpinning legal principles underpinning confidentiality and privacy.confidentiality and privacy.
Exploration of the threats and challenges Exploration of the threats and challenges to privacy, and the safeguards to promote to privacy, and the safeguards to promote & protect it. & protect it.
A TRAGIC EXAMPLE A TRAGIC EXAMPLE
Jacinta Saldanha Jacinta Saldanha
EVERYDAY EXAMPLESEVERYDAY EXAMPLES
EXAMPLES FROM GPEXAMPLES FROM GP
ABUSE OF CONFIDENTIALITY ABUSE OF CONFIDENTIALITY
“ “GAGGING ORDERS”GAGGING ORDERS”
An Ancient Ethical Principle An Ancient Ethical Principle
HIPPOCRATES 5HIPPOCRATES 5thth
Century BCCentury BC ‘‘All that may come to All that may come to
my knowledge in my knowledge in the exercise of my the exercise of my profession or in profession or in daily commerce daily commerce with men, which with men, which ought not to be ought not to be spread abroad, I spread abroad, I will keep secret and will keep secret and will never revealwill never reveal’’..
ETHICAL FOUNDATIONSETHICAL FOUNDATIONS
RESPECT for AUTONOMYRESPECT for AUTONOMY PROMISE KEEPINGPROMISE KEEPING CONSEQUENCESCONSEQUENCES VIRTUE ETHICSVIRTUE ETHICS
Dual FunctionDual Function
Fundamental right to privacy – Fundamental right to privacy – intrinsic value - independent ethical intrinsic value - independent ethical principle.principle.
Instrumental value of confidentiality Instrumental value of confidentiality
- serves the greater good of providing - serves the greater good of providing effective healthcare. effective healthcare.
Is confidentiality a decrepit Is confidentiality a decrepit concept?concept?
Siegler 1982 – “in nonbureaucratic, Siegler 1982 – “in nonbureaucratic, noninstitutional medical encounters…noninstitutional medical encounters…meticulous care should be taken to meticulous care should be taken to guarantee that patients’ medical & guarantee that patients’ medical & personal medical personal information will personal medical personal information will be kept confidential.”be kept confidential.”
Kennedy 1994. Impact of 1990 reforms Kennedy 1994. Impact of 1990 reforms leading to an ‘assault’ on confidentiality. leading to an ‘assault’ on confidentiality. ‘NHS purposes’ too broad a concept. ‘NHS purposes’ too broad a concept.
““The Modern NHS”The Modern NHS”
Montgomery 1999. …”we are reaching that stage Montgomery 1999. …”we are reaching that stage where the concept of confidentiality has become where the concept of confidentiality has become sufficiently misleading that it should be sufficiently misleading that it should be abandoned in favour of the idea of limited usage abandoned in favour of the idea of limited usage of information.”of information.”
““We need to think hard about how to explain to We need to think hard about how to explain to patients how confidentiality will work in the brave patients how confidentiality will work in the brave new world”. new world”.
Is Confidentiality aIs Confidentiality a‘‘decrepit conceptdecrepit concept’’? ?
Multiple gatekeepers. Multiple gatekeepers. The The ‘‘NHS FamilyNHS Family’’. . Integrated Care Records System. Integrated Care Records System. Media and IT. Social media. Media and IT. Social media. New statutes. NHS reforms. New statutes. NHS reforms. Outsourcing of work, multiple agencies.Outsourcing of work, multiple agencies. ‘‘The Audit Society- rituals of verificationThe Audit Society- rituals of verification ’’ Anti Terrorism agendaAnti Terrorism agenda ‘‘Big data’ - Care.dataBig data’ - Care.data 100,000 Genome project 100,000 Genome project
GMC – New Guidance 2009GMC – New Guidance 2009Key Changes Key Changes
Section 251 NHS Act 2006 allows for Section 251 NHS Act 2006 allows for disclosure of patient identifiable disclosure of patient identifiable information. information.
Recognition that victims of neglect or Recognition that victims of neglect or abuse may have impaired capacity. abuse may have impaired capacity.
Genetic information – permissible Genetic information – permissible disclosure in public interest or to disclosure in public interest or to prevent others from serious harm. prevent others from serious harm.
Supplementary guidance. Supplementary guidance.
Section 251 NHS Act 2006Section 251 NHS Act 2006
Secretary of State hasSecretary of State has
interim power to ensure that personal interim power to ensure that personal identifiable information, needed to identifiable information, needed to support a range of important work support a range of important work such as clinical audit, record such as clinical audit, record validation and research, can be used validation and research, can be used without consent of patients. without consent of patients.
CONSENT TO DISCLOSURECONSENT TO DISCLOSURE IMPLIED (INFERRED) CONSENTIMPLIED (INFERRED) CONSENT Sharing information within Health Care Team.Sharing information within Health Care Team.
““PRESUMED CONSENTPRESUMED CONSENT”” –– ““OPTING OUTOPTING OUT””
EXPRESS (EXPLICIT) CONSENTEXPRESS (EXPLICIT) CONSENT Disclosure of personal information for Disclosure of personal information for Audit, research, epidemiology, administration. Reports Audit, research, epidemiology, administration. Reports
for third parties e.g. insurance. for third parties e.g. insurance. Access to Medical Records Act 1988.Access to Medical Records Act 1988.
NON-CONSENSUAL DISCLOSURENON-CONSENSUAL DISCLOSURE
NON-CONSENSUAL DISCLOSURENON-CONSENSUAL DISCLOSUREKEY GMC KEY GMC ‘‘EXCEPTIONSEXCEPTIONS’’
Disclosures required by law, to law courts Disclosures required by law, to law courts or to statutory regulatory bodies. or to statutory regulatory bodies.
Required by third parties e.g. insurance Required by third parties e.g. insurance companies, occupational health. companies, occupational health.
Protection of third parties from serious Protection of third parties from serious harm or in the best interests of patient harm or in the best interests of patient lacking capacity. lacking capacity.
Disclosure in the Disclosure in the ‘‘public interestpublic interest’’..
NB: Always inform patients where practicableNB: Always inform patients where practicable..
PUBLIC INTERESTPUBLIC INTEREST
““……To protect individuals or society To protect individuals or society from risks of serious harm such as from risks of serious harm such as communicable diseases or communicable diseases or serious serious crimecrime; or to enable medical research; or to enable medical research, , education or other secondary uses of education or other secondary uses of information that will benefit society information that will benefit society over time.over time.”” [para36 GMC 2009]. [para36 GMC 2009].
COMMON LAWCOMMON LAW‘‘Old modelOld model’’
Balancing:Balancing:
Public interest in Public interest in doctors keeping doctors keeping confidencesconfidences
Vs Vs
Public interest in Public interest in protecting society protecting society or individuals from or individuals from harmharm
EGDELL – Key principlesEGDELL – Key principles
1.1. There must be a real and persistent There must be a real and persistent risk of danger.risk of danger.
2.2. Disclosure must be to a person with Disclosure must be to a person with a legitimate interest in receiving a legitimate interest in receiving the information. the information.
3.3. Even when public interest requires Even when public interest requires disclosure, this must be confined to disclosure, this must be confined to what is strictly necessary. what is strictly necessary.
W v Egdell. 1990 (CA)W v Egdell. 1990 (CA)
THE HUMAN RIGHTS ACTTHE HUMAN RIGHTS ACT19981998
Article 8Article 8: : Private & family lifePrivate & family life..
Article 10: Freedom of expression.Article 10: Freedom of expression.
Legislation permitting breaches must:Legislation permitting breaches must: Pursue a legitimate aimPursue a legitimate aim Be considered necessary in a Be considered necessary in a
democratic society democratic society Be proportionate to the need.Be proportionate to the need.
HUMAN RIGHTSHUMAN RIGHTSKey Key ‘‘PrivacyPrivacy’’ Cases Cases
Douglas v Hello! (2001). Douglas v Hello! (2001). Venables v News Group Newspapers Venables v News Group Newspapers
Ltd (2001)Ltd (2001) Wainwright v Home Office (2003,HL)Wainwright v Home Office (2003,HL) Campbell v MGN Ltd (2003, HL)Campbell v MGN Ltd (2003, HL)
Why is Campbell so important?Why is Campbell so important?
Balancing Article 8 vs Article 10 Balancing Article 8 vs Article 10
SHIFT from public interest to SHIFT from public interest to individual rights and privacy. individual rights and privacy.
PRIVACY & THE LAWPRIVACY & THE LAW
Emphasis on values underpinning Emphasis on values underpinning
respect for private life – respect for private life – privacy, privacy, personal autonomy & dignity.personal autonomy & dignity.
Broader notion than confidentiality.Broader notion than confidentiality. The need for a The need for a confidential confidential
relationshiprelationship is not so important. is not so important.
MULTIPLE STATUTES MULTIPLE STATUTES REQUIRING DISCLOSURE REQUIRING DISCLOSURE
Police & Criminal Evidence Act 1984 Police & Criminal Evidence Act 1984 (PACE) superseded by Serious Organised (PACE) superseded by Serious Organised Crime and Police Act 2005 (SOCPA)Crime and Police Act 2005 (SOCPA)
Road Traffic Act 1988Road Traffic Act 1988 Public Health Act 1984 Public Health Act 1984 Children’s Act 1989 Children’s Act 1989 Audit Commission Act 1998Audit Commission Act 1998 Terrorism Act 2000.Terrorism Act 2000. NHS Act 2006. NHS Act 2006. Health and Social Care Act 2003/8/12 Health and Social Care Act 2003/8/12
THREATS THREATS
Patient Data – How Safe?Patient Data – How Safe?
PROTECTION OF PRIVACY: PROTECTION OF PRIVACY: ‘‘TRADITIONALTRADITIONAL’’ VS VS ‘‘DATA PROTECTIONDATA PROTECTION’’
‘‘Data protection/information Data protection/information governance modelgovernance model’’ based on the based on the Data Protection Act. Data Protection Act.
Records Records ‘‘fit for purposefit for purpose’’: accurate, : accurate, relevant and adequate. relevant and adequate.
Collective responsibility system vs Collective responsibility system vs privileged relationship. privileged relationship.
More proactive and robust? More proactive and robust?
BMA discussion paper BMA discussion paper 2005.2005.
WHAT ARE THE WHAT ARE THE SAFEGUARDS?SAFEGUARDS?
Professional codes and traditionsProfessional codes and traditions Common law and statutesCommon law and statutes NHS code of practice. NHS code of practice. Caldicott Report 1997: 6 key Caldicott Report 1997: 6 key
principles and Caldicott guardians.principles and Caldicott guardians. Electronic patientsElectronic patients’’ records: records: ‘‘sealed sealed
envelopeenvelope’’/locked, passwords etc. /locked, passwords etc.
SAFEGUARDS - STATUTESSAFEGUARDS - STATUTES
Data Protection Act 1998Data Protection Act 1998 Access to Health Records Act 1990Access to Health Records Act 1990 Human Rights Act 1998Human Rights Act 1998 Computer Misuse Act 1990Computer Misuse Act 1990 NHS Act 2006 – Ethics & NHS Act 2006 – Ethics &
Confidentiality Committee (ECC).Confidentiality Committee (ECC).
CARE.DATACARE.DATA An initiative to extract data from NHS An initiative to extract data from NHS
primary care medical records unless primary care medical records unless patients have opted out. Linked to patients have opted out. Linked to hospital data and ‘pseudo-hospital data and ‘pseudo-anonymised’ but postal code and anonymised’ but postal code and NHS number included.NHS number included.
The BMA, under pressure from GPs, The BMA, under pressure from GPs, have requested that this can only have requested that this can only operate with patients ‘opting in’. operate with patients ‘opting in’.
‘‘Social License’ FailureSocial License’ Failure
Defects in warrants of trust – lack of Defects in warrants of trust – lack of consultation. Scope for linking consultation. Scope for linking sensitive data to individuals. sensitive data to individuals.
Rupture of traditional role, Rupture of traditional role, expectations and duties of GPs. expectations and duties of GPs.
Uncertainty of care.data as a public Uncertainty of care.data as a public good. Use by commercial companies good. Use by commercial companies and big pharma for ‘health and big pharma for ‘health purposes’. purposes’.
Carter P, Laurie GT, Dixon-Woods M. JME 2015;0:1-6. The social license for research: why Carter P, Laurie GT, Dixon-Woods M. JME 2015;0:1-6. The social license for research: why care.data ran into trouble. doi 10.1136/medethics2014-102374care.data ran into trouble. doi 10.1136/medethics2014-102374
CASE DISCUSSIONCASE DISCUSSION
CONCLUSION ICONCLUSION I
Confidentiality remains a Confidentiality remains a fundamental, albeit not absolute, fundamental, albeit not absolute, professional duty and is key to professional duty and is key to trust. It can inadvertently be trust. It can inadvertently be breached, or another more breached, or another more compelling ethical duty may take compelling ethical duty may take precedence. precedence.
CONCLUSION IICONCLUSION II
With the increased complexity in With the increased complexity in healthcare, the greater emphasis on healthcare, the greater emphasis on accountability, ‘personalised’ & marketised accountability, ‘personalised’ & marketised medicine, and the (wild) enthusiasm for ‘big medicine, and the (wild) enthusiasm for ‘big data’, we witness the dominant data’, we witness the dominant ethical/legal framework shifting back to a ethical/legal framework shifting back to a utilitarian cost-benefit calculus with both utilitarian cost-benefit calculus with both the traditional concept of confidentiality the traditional concept of confidentiality and the more modern rights-based concept and the more modern rights-based concept of privacy under threat. of privacy under threat.
