Ethical Issues - Confidentiality
Clinical Ethics Committees and access to health records
Patients, or their relatives, may want access to the written record of the deliberations of the committee, assuming that they have been informed.
What is the responsibility of a Clinical Ethics Committee to provide access to minutes of a committee meeting?
Data Protection Act 1998
The subject access provisions of the Data Protection Act 1998 provide that an individual having submitted a request in writing is entitled to be provided with a copy of the personal data held about him or her. “Personal data” is defined as information that relates to a living individual who can be identified from the data. This would therefore include health records and possibly minutes of Clinical Ethics Committee meetings.
Information need not be disclosed however, where another individual can be identified from that information (except where that individual is a health professional who has contributed to the care and treatment of the patient). This data should be withheld unless the other individual has consented to the disclosure.
Where the treatment and care of a patient has been subject to discussion by a clinical ethics committee the patient could have access to notes / minutes of the meeting if he /she could be identified from them. However access may be denied if individual members of the committee who are not healthcare professionals (legal, lay, religious members) could be themselves identified from the minutes (and they do not consent to such disclosure). It is therefore relevant whether the minutes identify comments from individual members of the committee or give an opinion of the committee as a whole.
Freedom of Information Act 2000
Relevant information about the requirements of the Freedom of Information Act can be found on the website.
The Freedom of Information Act gives a general right of access to all types of recorded information held by public authorities (NHS bodies are public authorities). The right of access to information under this Act does not come into force until the 1st January 2005.
Any person who makes a request to a public authority for information will have to be told whether information is held and that information must be supplied. However there are a number of exemptions.
Public Authorities are also required to proactively make some of the information they hold available through a publication scheme. The publication scheme must organise the information to be published into classes and then set out how that information is to be published. Model publication schemes have been approved for various health sector bodies.
The Network is considering the applicability of the provisions of the Act to minutes of Clinical Ethics Committees.
In 1997 the Department of Health published the Caldicott Report (‘On the Review of Patient-Identifiable Information’). It considered the flow of identifiable patient information and recommended that confidentiality should be safeguarded by anonymising health data, where possible. Each NHS organisation must have a ‘guardian’ (normally a senior health professional) to oversee all procedures affecting access to person-identifiable information.