Transcript CONFIDENTIALITY in MEDICINE
CONFIDENTIALITY & PRIVACY IN HEALTHCARE
Ethics & Law
Paquita de Zulueta. Apothecaries 2015
AIMS
Deeper understanding of the ethical and legal principles underpinning confidentiality and privacy.
Exploration of the threats and challenges to privacy, and the safeguards to promote & protect it.
A TRAGIC EXAMPLE
Jacinta Saldanha
EVERYDAY EXAMPLES
EXAMPLES FROM GP
ABUSE OF CONFIDENTIALITY
“GAGGING ORDERS”
An Ancient Ethical Principle
HIPPOCRATES 5 th Century BC
‘
All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal
’
.
ETHICAL FOUNDATIONS
RESPECT for AUTONOMY PROMISE KEEPING CONSEQUENCES VIRTUE ETHICS
Dual Function
Fundamental right to privacy – intrinsic value - independent ethical principle.
Instrumental value of confidentiality - serves the greater good of providing effective healthcare.
Is confidentiality a decrepit concept?
Siegler 1982 – “in nonbureaucratic, noninstitutional medical encounters…meticulous care should be taken to guarantee that patients’ medical & personal medical personal information will be kept confidential.” Kennedy 1994. Impact of 1990 reforms leading to an ‘assault’ on confidentiality. ‘NHS purposes’ too broad a concept.
“The Modern NHS”
Montgomery 1999. …”we are reaching that stage where the concept of confidentiality has become sufficiently misleading that it should be abandoned in favour of the idea of limited usage of information.” “We need to think hard about how to explain to patients how confidentiality will work in the brave new world”.
Is Confidentiality a
‘
decrepit concept
’
?
Multiple gatekeepers. The ‘ NHS Family ’ . Integrated Care Records System. Media and IT. Social media. New statutes. NHS reforms. Outsourcing of work, multiple agencies.
‘ The Audit Society- rituals of verification ’ Anti Terrorism agenda ‘Big data’ - Care.data
100,000 Genome project
GMC – New Guidance 2009 Key Changes
Section 251 NHS Act 2006 allows for disclosure of patient identifiable information. Recognition that victims of neglect or abuse may have impaired capacity. Genetic information – permissible disclosure in public interest or to prevent others from serious harm. Supplementary guidance.
Section 251 NHS Act 2006
Secretary of State has interim power to ensure that personal identifiable information, needed to support a range of important work such as clinical audit, record validation and research, can be used without consent of patients.
CONSENT TO DISCLOSURE
IMPLIED (INFERRED) CONSENT
Sharing information within Health Care Team.
“
PRESUMED CONSENT
” – “ OPTING OUT ”
EXPRESS (EXPLICIT) CONSENT
Disclosure of personal information for Audit, research, epidemiology, administration. Reports for third parties e.g. insurance. Access to Medical Records Act 1988.
NON-CONSENSUAL DISCLOSURE
NON-CONSENSUAL DISCLOSURE KEY GMC
‘
EXCEPTIONS
’ Disclosures required by law, to law courts or to statutory regulatory bodies. Required by third parties e.g. insurance companies, occupational health. Protection of third parties from serious harm or in the best interests of patient lacking capacity. Disclosure in the ‘ public interest ’ .
NB: Always inform patients where practicable.
PUBLIC INTEREST
“ …To protect individuals or society from risks of serious harm such as communicable diseases or serious crime; or to enable medical research, education or other secondary uses of information that will benefit society over time.
” [para36 GMC 2009].
Balancing:
COMMON LAW
‘
Old model
’
Public interest in doctors keeping confidences Vs Public interest in protecting society or individuals from harm
EGDELL – Key principles
1.
2.
3.
There must be a real and persistent risk of danger.
Disclosure must be to a person with a legitimate interest in receiving the information. Even when public interest requires disclosure, this must be confined to what is strictly necessary. W v Egdell. 1990 (CA)
THE HUMAN RIGHTS ACT 1998
Article 8: Private & family life. Article 10: Freedom of expression.
Legislation permitting breaches must:
Pursue a legitimate aim Be considered necessary in a democratic society Be proportionate to the need.
HUMAN RIGHTS Key
‘
Privacy
’
Cases
Douglas v Hello! (2001). Venables v News Group Newspapers Ltd (2001) Wainwright v Home Office (2003,HL) Campbell v MGN Ltd (2003, HL)
Why is Campbell so important?
Balancing Article 8 vs Article 10 SHIFT from public interest to individual rights and privacy.
PRIVACY & THE LAW
Emphasis on values underpinning respect for private life – privacy,
personal autonomy & dignity.
Broader notion than confidentiality.
The need for a confidential relationship is not so important.
MULTIPLE STATUTES REQUIRING DISCLOSURE
Police & Criminal Evidence Act 1984 (PACE) superseded by Serious Organised Crime and Police Act 2005 (SOCPA) Road Traffic Act 1988 Public Health Act 1984 Children’s Act 1989 Audit Commission Act 1998 Terrorism Act 2000.
NHS Act 2006. Health and Social Care Act 2003/8/12
THREATS
Patient Data – How Safe?
PROTECTION OF PRIVACY:
‘
TRADITIONAL
’
VS
‘
DATA PROTECTION
’ ‘ Data protection/information governance model ’ based on the Data Protection Act. Records ‘ fit for purpose ’ : accurate, relevant and adequate. Collective responsibility system vs privileged relationship. More proactive and robust? BMA discussion paper 2005.
WHAT ARE THE SAFEGUARDS?
Professional codes and traditions Common law and statutes NHS code of practice. Caldicott Report 1997: 6 key principles and Caldicott guardians.
Electronic patients ’ records: ‘ sealed envelope ’ /locked, passwords etc.
SAFEGUARDS - STATUTES
Data Protection Act 1998 Access to Health Records Act 1990 Human Rights Act 1998 Computer Misuse Act 1990 NHS Act 2006 – Ethics & Confidentiality Committee (ECC).
CARE.DATA
An initiative to extract data from NHS primary care medical records unless patients have opted out. Linked to hospital data and ‘pseudo anonymised’ but postal code and NHS number included.
The BMA, under pressure from GPs, have requested that this can only operate with patients ‘opting in’.
‘Social License’ Failure
Defects in warrants of trust – lack of consultation. Scope for linking sensitive data to individuals. Rupture of traditional role, expectations and duties of GPs. Uncertainty of care.data as a public good. Use by commercial companies and big pharma for ‘health purposes’. 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/medethics2014-102374
CASE DISCUSSION
CONCLUSION I
Confidentiality remains a fundamental, albeit not absolute, professional duty and is key to trust. It can inadvertently be breached, or another more compelling ethical duty may take precedence.
CONCLUSION II
With the increased complexity in healthcare, the greater emphasis on accountability, ‘personalised’ & marketised medicine, and the (wild) enthusiasm for ‘big data’, we witness the dominant ethical/legal framework shifting back to a utilitarian cost-benefit calculus with both the traditional concept of confidentiality and the more modern rights-based concept of privacy under threat.
Any Questions?
@HVHForum