understanding confidentiality and the law on access to medical records

3
Understanding confidentiality and the law on access to medical records Nick Nicholas Sotiris Nicholas Abstract The doctor patient relationship has never been so seriously threatened with the public loss of confidence that has arisen because of the wide- spread loss of data in both the public and private sectors. All data espe- cially patient sensitive information must be treated with respect. Failure to maintain confidentiality is a serious offence punishable in common law but much more importantly the GMC has the statutory power to suspend or remove a doctor from the medical register. Doctors therefore, must have an understanding as to how data ought to be treated and pro- tected within the working environment and what legal rights patients have in accessing their data in certain circumstances. Transparency is paramount in securing the trust between doctors and their patients, who need reassurance that if they are to divulge sensitive and often embarrassing information, that the healthcare professionals will respect their data by keeping it secure and free from outside interference. Keywords confidentiality; consent; Data Protection Act 1998 Introduction This duty of confidence goes back to the time of Hippocrates (300BC), when the Hippocratic oath refers to ‘‘Whatever in connection with my professional service, or not in connection with it, I see or hear, in the life of men, which ought not to be spoken of abroad, I will not divulge, as reckoning that all such should be kept secret.’’ Confidentiality is the cornerstone of the doctor patient rela- tionship. It underpins the trust that patients have in the medical profession and any breach in that trust can only lead to harm caused by failure of patients to disclose sensitive information to them. Thus, it comes as no surprise that the professional regu- lator (GMC) takes the issue of confidentiality very seriously. Any breach in the duty of confidence by doctors can lead to serious consequences such as suspension and even removal of practising privileges (Box 1). Confidentiality also helps to confirm respect for patient autonomy which is now enshrined within the Human Rights Act 2000, under article 8 right to respect for private life. The main case for this principle was established in the case of Campbell v MGN [2004], when the right to confidentiality was no longer considered to be in the public interest, but rather a private interest. In this case, the publication of a famous model’s drug taking was disclosed without her consent. The court had to balance the public interests of freedom of expression under article 10 of the HRA versus the private interests of an individual under article 8 (right to private life). Thus, the right to privacy and personal autonomy trumps the right to freedom of expression. The duty of confidentiality owed by the doctor has to be weighed up against the public interest of disclosure that comes with sharing information such as for research, crime reduction, to reduce the spread of communicable diseases, and access to patient records both whilst alive and after death. Wherever possible, data sharing should be anonymized and coded or else wherever possible, patient consent ought to be obtained for disclosures that involve patient identifiable information. Access to health records is often an area of concern for doctors especially in regard to requests for patient notes by a third party and access to deceased person’s records. Access to health records by a third party Individuals have a right to apply for access to health records irrespective of when they were compiled under the Data Protection Act 1998. This Act only covers disclosure of records relating to living persons. The request has to be accompanied by a valid signed and dated consent from the patient. Data should not be released to any third party, for if doing so would result in ‘harm to the physical or mental health of the data subject or other person’ (Box 2). Remedies for breach of confidentiality C Injunction C Declaration C Damages C Suspension/removal from the GMC register Box 1 Criteria necessary prior to disclosure to third parties C The patient must be aware of the purpose of the disclosure and the extent of information that will be given C The patient must be aware that the information cannot be concealed or withheld C There must be written consent from the patient to the disclosure C Only information relevant to the request can be disclosed C Only factual information that can be substantiated and presented in an unbiased manner can be included Box 2 Nick Nicholas BSc (Hons) MD FRCOG Grad Dip Law is a Consultant Obstetrician and Gynaecologist and Caldicott Guardian at Hillingdon Hospital Trust, Uxbridge, Middlesex, UK. Conflicts of interest: none. Sotiris Nicholas BSc(Hons) MB BS is a Specialist Trainee in Anaesthetics (Year 1) at Charing Cross Hospital, London, UK. Conflicts of interest: none. ETHICS/EDUCATION OBSTETRICS, GYNAECOLOGY AND REPRODUCTIVE MEDICINE 20:5 161 Ó 2010 Elsevier Ltd. All rights reserved.

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Page 1: Understanding confidentiality and the law on access to medical records

Remedies for breach of confidentiality

C Injunction

C Declaration

C Damages

C Suspension/removal from the GMC register

ETHICS/EDUCATION

Understandingconfidentiality and the lawon access to medical recordsNick Nicholas

Sotiris Nicholas

Box 1

AbstractThe doctor patient relationship has never been so seriously threatened

with the public loss of confidence that has arisen because of the wide-

spread loss of data in both the public and private sectors. All data espe-

cially patient sensitive information must be treated with respect. Failure

to maintain confidentiality is a serious offence punishable in common

law but much more importantly the GMC has the statutory power to

suspend or remove a doctor from the medical register. Doctors therefore,

must have an understanding as to how data ought to be treated and pro-

tected within the working environment and what legal rights patients

have in accessing their data in certain circumstances. Transparency is

paramount in securing the trust between doctors and their patients,

who need reassurance that if they are to divulge sensitive and often

embarrassing information, that the healthcare professionals will respect

their data by keeping it secure and free from outside interference.

Keywords confidentiality; consent; Data Protection Act 1998

Criteria necessary prior to disclosure to third parties

C The patient must be aware of the purpose of the disclosure

and the extent of information that will be given

Introduction

This duty of confidence goes back to the time of Hippocrates

(300BC), when the Hippocratic oath refers to ‘‘Whatever in

connection with my professional service, or not in connection

with it, I see or hear, in the life of men, which ought not to be

spoken of abroad, I will not divulge, as reckoning that all such

should be kept secret.’’

Confidentiality is the cornerstone of the doctor patient rela-

tionship. It underpins the trust that patients have in the medical

profession and any breach in that trust can only lead to harm

caused by failure of patients to disclose sensitive information to

them. Thus, it comes as no surprise that the professional regu-

lator (GMC) takes the issue of confidentiality very seriously. Any

breach in the duty of confidence by doctors can lead to serious

consequences such as suspension and even removal of practising

privileges (Box 1).

Confidentiality also helps to confirm respect for patient

autonomy which is now enshrined within the Human Rights Act

Nick Nicholas BSc (Hons) MD FRCOG Grad Dip Law is a Consultant Obstetrician

and Gynaecologist and Caldicott Guardian at Hillingdon Hospital Trust,

Uxbridge, Middlesex, UK. Conflicts of interest: none.

Sotiris Nicholas BSc(Hons) MB BS is a Specialist Trainee in Anaesthetics

(Year 1) at Charing Cross Hospital, London, UK. Conflicts of interest:

none.

OBSTETRICS, GYNAECOLOGY AND REPRODUCTIVE MEDICINE 20:5 161

2000, under article 8 right to respect for private life. The main

case for this principle was established in the case of Campbell v

MGN [2004], when the right to confidentiality was no longer

considered to be in the public interest, but rather a private

interest. In this case, the publication of a famous model’s drug

taking was disclosed without her consent. The court had to

balance the public interests of freedom of expression under

article 10 of the HRA versus the private interests of an individual

under article 8 (right to private life). Thus, the right to privacy

and personal autonomy trumps the right to freedom of

expression.

The duty of confidentiality owed by the doctor has to be

weighed up against the public interest of disclosure that comes

with sharing information such as for research, crime reduction,

to reduce the spread of communicable diseases, and access to

patient records both whilst alive and after death. Wherever

possible, data sharing should be anonymized and coded or else

wherever possible, patient consent ought to be obtained for

disclosures that involve patient identifiable information.

Access to health records is often an area of concern for doctors

especially in regard to requests for patient notes by a third party

and access to deceased person’s records.

Access to health records by a third party

Individuals have a right to apply for access to health records

irrespective of when they were compiled under the Data

Protection Act 1998. This Act only covers disclosure of records

relating to living persons. The request has to be accompanied by

a valid signed and dated consent from the patient. Data should

not be released to any third party, for if doing so would result in

‘harm to the physical or mental health of the data subject or other

person’ (Box 2).

C The patient must be aware that the information cannot be

concealed or withheld

C There must be written consent from the patient to the

disclosure

C Only information relevant to the request can be disclosed

C Only factual information that can be substantiated and

presented in an unbiased manner can be included

Box 2

� 2010 Elsevier Ltd. All rights reserved.

Page 2: Understanding confidentiality and the law on access to medical records

Exceptions to the Access to Health Records Act 1990

C Information likely to cause serious physical or mental harm to

any individual

C Information relating to an individual, other than the patient,

who could be identified from that information, unless prior

consent has been given

C Where the record has a note from the deceased patient

denying access to personal representatives

Box 3

Data protection principles

C Personal data should be processed fairly and lawfully.

C Personal data shall be obtained only for one or more specified

and lawful purposes and shall not be further processed in any

manner incompatible with those purposes.

C Personal data shall be adequate, relevant and not excessive in

relation to the purposes for which they are processed.

ETHICS/EDUCATION

Access to Medical Reports Act 1988

This Act gives patients the right to inspect or receive a copy of

medical reports that have been prepared for employment or

insurance purposes. Before a report is prepared, the Act provides

that consent be obtained from the individual and that it is

conditional on being given access to the report before being sent

on to the employer or insurance company. Access is not absolute

and there are three exceptions, which are the same as the Access

to Health Records Act 1990 1 and 2 (Box 3). The only difference

is in the third reason, which is ‘where disclosure would indicate

the intentions of the doctor in respect of the individual.’

Access to deceased person’s records

The new GMC guidance on Confidentiality (2009) provides more

clarity on this issue. If the patient has asked for information to be

kept confidential even after death, then clearly the patient’s

wishes should be respected.

The duty of non-disclosure continues after death. In the case

of Bluck v Information Commissioner, the judgement concluded

that the ‘public interest in maintaining confidentiality in the

medical records of a deceased outweighs, by some way, the

countervailing public interest in disclosure’. Also more recently

Lewis v Secretary of State for Health (2008) confirms this

principle.

Thus medical records should not be disclosed because they

fall within the scope of the Freedom of Information Act 2000

(FOI) section 41 and accordingly are exempt from disclosure.

Prior to disclosure certain criteria have to be considered (Box 4).

Criteria that need to be taken into account prior todisclosure of information about deceased patients

C Whether disclosure of information could cause distress to or

be of benefit to the patient’s partner or family

C Whether disclosure about the deceased will, in effect, disclose

information about the patient’s family or other people

C Whether the information is already in the public domain or can

be anonymized

C The purpose of the disclosure

Box 4

OBSTETRICS, GYNAECOLOGY AND REPRODUCTIVE MEDICINE 20:5 162

Freedom of Information Act 2000

The FOI Act (2000) creates a right of access to information held

by public authorities, subject to certain exemptions:

� where information is given in confidence,

� where disclosure of information is prohibited under law,

� where disclosure could cause harm to an individual.

Thus, a patient seeking medical information about herself cannot

do so through the FOI Act 2000, since this is an absolute

exemption.

The Data Protection Act 1998

The Data Protection Act 1998 applies to manual and computer-

ized records. Breach of the Act is a criminal offence. Data

controllers (who control the purposes and manner in which

personal data are processed) are expected to comply with the

eight data protection principles (Box 5).

Although patients have a right to access their personal data, it

is not an absolute right. The data controller need not comply in

any of the following circumstances:

� he isunsureof the identityof thepersonseeking the information,

� disclosure of information relating to a third party would

result; unless, of course, the third party consents to the

information being given,

� compliance would cause serious harm,

� disclosure is not in the best interests of the data subject.

Schedule 1 requires that data shall be fairly and lawfully

processed.

Schedule 2 sets out the conditions that permit data processing of

personal data, namely consent.

Schedule 3 states that the data subject must give implicit consent

to data processing necessary to protect the medical interests of

the data subject or for the administration of justice.

C Personal data shall be accurate and, where necessary, kept up

to date.

C Personal data shall not be kept for any longer than is neces-

sary for those purposes.

C Personal data shall be processed in accordance with the rights

of data subjects within the Act.

C Appropriate technical and organizational measures shall be

taken against unauthorized processing of data and against

accidental loss, damage or destruction of personal data.

C Personal data shall not be transferred to a country outside the

EU unless that country ensures adequate protection for the

rights and freedoms of the data subjects in relation to

processing of personal data.

Box 5

� 2010 Elsevier Ltd. All rights reserved.

Page 3: Understanding confidentiality and the law on access to medical records

Justification for disclosure

C Consent by the patient

C Statutory

B Notifiable diseases such as smallpox, cholera, typhus

B Department of Health for Termination of Pregnancy

B Births and Deaths

B Police on request: name and address of driver of the

vehicle who is allegedly guilty of a motoring offence under

the Road Traffic Act 1988

B Police when investigating a serious crime such as rape,

murder, terrorist activities.

Disclosure in the public interest

C Protecting the public (public policy)

B Reporting concerns about patients to the DVLA

C Protecting the public from crime

B Reporting gunshot and knife wounds

C Protecting third parties.

Box 6

ETHICS/EDUCATION

Disclosure is not absolute, and there are circumstances when

the doctor can and must divulge information when appropriate

(Box 6).

Statutory exemption to consent

Section 251 of the NHS Act 2006 replaces s40 of the Health and

Social Care Act 2001. Section 251 can only be used for medical

purposes in situations where disclosure of patient identifiable

information is necessary and consent is not practical. Consent for

s251 approval has to be made through application to the National

Information Governance Board (NIGB). The NIGB is a statutory

body empowered by the Secretary of State for Health under the

Health and Social Care Act 2008, to oversee applications for the

OBSTETRICS, GYNAECOLOGY AND REPRODUCTIVE MEDICINE 20:5 163

use of patient data in the interests of patients and the wider

public.

Conclusion

Recent disclosures around the loss of sensitive public data by

careless civil servants have raised the public interest in confi-

dentiality. The government and the professional bodies have

attempted to reassure patients that their medical records and the

way in which data are stored, handled and utilized in the NHS is

kept safe and confidential so that only those healthcare workers

with legitimate access to their data have access to it. The gate-

keepers within the NHS, local authority social care and partner

organizations are the Caldicott Guardians, responsible primarily

for protecting patient information and more increasingly infor-

mation governance in general. Codes of conduct around confi-

dentiality, issued by the GMC will help doctors wade through these

muddied waters so that ultimately the doctor patient relationship

will be strengthened and patients can have confidence that the

founding principles of confidentiality expressed by Hippocrates so

long ago are maintained. A

FURTHER READING

Access to Health Records Act 1990.

Access to Medical Reports Act 1988.

Bluck v Information Commissioner and Epsom and St Helier University NHS

Trust (EA/2006/0090), 17 September 2007.

Campbell v MGN [2004], HL 22.

Confidentiality (GMC) 2009.

Data Protection Act 1998.

Freedom of Information Act 2000.

Health and Social Care Act 2001.

Hippocrates 300BC.

Human Rights Act 2000.

NHS Act 2006.

Nicholas Lewis v Secretary of State for Health & Michael Redfern [2008]

EWHC 2196 (QB).

Road Traffic Act 1988.

� 2010 Elsevier Ltd. All rights reserved.