Information society : agenda for action in the UK : evidence received after 31 March 1996 / Select Committee on Science and Technology.
- Great Britain. Parliament. House of Lords. Science and Technology Committee.
- Date:
- 1996
Licence: Open Government Licence
Credit: Information society : agenda for action in the UK : evidence received after 31 March 1996 / Select Committee on Science and Technology. Source: Wellcome Collection.
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![16 April 1996 ] [Continued It is essential that a// patient information is treated as sensitive and handled with the same level of security. Individuals, and not the health professions, should decide which information may be shared and with whom. What type of information is considered to be sensitive will depend partly on the individual concerned, and partly on circumstances. Whilst it is likely to be generally recognised that information concerning a positive HIV test, or a termination of pregnancy, is sensitive, there may be less general understanding currently about the sensitivity of details of, for example, stress-related illnesses and in the future the results of predictive genetic testing. Such information may be detrimental to the prospects of those individuals for employment, insurance, etc. Thus, patients must be able to trust that doctors will not pass on identifiable personal information without their permission, and similarly that information cannot be accessed by others, not directly involved in their care without consent. The implications of patients withholding information from those providing healthcare from them are great. Clearly doctors need full information about their patients for diagnosis and to provide appropriate care and treatment. There are wider implications than this; a patient concealing a condition such as epilepsy which could make driving dangerous, puts the public as well as himself at risk, but also others. In addition, full clinical information is essential for the public health purposes of epidemiological and outcomes studies, to advance scientific knowledge and understanding. _ BMA ACTIVITY ABOUT ITS CONCERNS ON CONFIDENTIALITY OF IDENTIFIABLE PERSONAL HEALTH INFORMATION CONTINUES DESPITE THE GOVERNMENT’S LACK OF SUPPORT FOR LORD WALTON’S BILL. The BMA Council: — advised its members as a matter of policy not to link their systems to the NHS-wide (or any other) Network until a competent data security policy is implemented to protect patient privacy. — commissioned a data security policy Security in Clinical Information Systems from Dr Ross Anderson of Cambridge University Computer Laboratory, October 1995. — distributed the policy, for constructive critique, to Chief Executives of NHS Trusts and Directly Managed Units (DMUs), Medical Staff Committees of Trusts and DMUs, Regional Health Authorities (RHAs), Directors of Public Health of RHAs, Executive Directors of District Health Authorities (DHAs) and Family Health Service Authorities (FHSAs), Chairmen and Secretaries of Local Medical Committees, Chief Executives and Executive Directors of Special Health Authorities, Chairman of Public Health Laboratory Service (PHLS) Board, Medical Royal Colleges, Patient and Healthcare Professional Organisations, Audit Commission, Data Protection Registrar and Ombudsman, January 1996. — agreed to the submission by Dr Anderson of a scientific paper based on Security in Clinical Information Systems to the Institute of Electrical and Electronics Engineers Incorporated (IEEE) Symposium on Security and Privacy on Oakland, California, 6-8 May 1996. — is jointly sponsoring, with The Isaac Newton Institute, an international scientific meeting Personal Information—Security, Engineering and Ethics which will be held at Cambridge University, 21/22 June 1996. — undertook a programme of briefings for healthcare professional and patient organisations from July 1995. — held series of meetings with Secretary of State, ministers and civil servants between BMA elected members and secretariat. — raised awareness with BMA members, healthcare professionals and patient organisations with confidentiality up-date briefing papers since July 1995. — fulfilled a programme of speaking engagements on confidentiality of health data by BMA elected members and secretariat at conferences of healthcare professionals, Information Technology (IT) specialists and BMA Divisional meetings. — maintains a watching brief of developments on IT and handling of identifiable patient data in NHS. — developed a handbook on Disclosure in the Public Interest (to be published May 1996) to define the narrow range of situations where identifiable health information must be shared—even without patient consent (eg cases of murder, rape or at the direction of a judge). — commissioned a critique of NHS Executive’s Information Management and Technology (IM&T) Strategy and its implications which will be published in June 1996 and widely circulated. — undertakes detailed briefings to journalists, thus raising of public awareness of issues on privacy of personal health data in newspapers, journals, television and radio. — isnow making a detailed study to respond to the Department of Health—Home Office consultation document The EC Data Protection Directive (95/46/EC) June—July 1996.](https://iiif.wellcomecollection.org/image/b32218631_0021.jp2/full/800%2C/0/default.jpg)
