Petition on the Health and Social Care Bill

House of Commons Report Stage: Health and Social Care Bill

We have continuing concerns that Clause 62 (N.B. - renumbered as clause 67) gives the Secretary of State unprecedented powers to collect patient data without consent. It is an attack on patient confidentiality. The Government has not made a proper case for overriding patient consent, even for the cancer registries. Further, the Government is embarking on legislation without a due process of public consultation.

There has been no time for a truly informed public debate on the intended aims of this clause and what we as representatives of patient, health professional and academic organisations anticipate will be its actual effect.

Clause 62 would have an extensive impact on the management and distribution of our identifiable health data, without our knowledge (much less consent). It would give powers to the Secretary of State to pick and choose who shall have access to anonymised health data. These measures align poorly with recent Government pronouncements on both the primacy of informed consent and the commitment to transparency of NHS processes in the wake of the Alder Hey Inquiry.

We do not accept the Department of Health's assertion that criticisms are no more than "misguided speculation". We believe that the drafting of Clause 62 remains dangerously broad. It allows "expedient" use of identifiable patient information at the discretion of the executive, subject only to clawback safeguards which we believe are ineffectual.

The clause weakens the current Data Protection Act exemption from informed consent, from a test of "necessity" to one of "reasonable practicality". This turns on its head the ethical basis of long-established conventions governing medical confidentiality.

We call upon the Government to withdraw Clause 62 in its entirety pending full public consultation, and for a subsequent redraft which explicitly acknowledges the primacy of informed consent.

Signed :

Donna Covey, Director, Association of Community Health Councils for England and Wales (ACHCEW)
Ruth Lowbury, Director, BMA Foundation for AIDS
Dr Mike Bainbridge, Chairman, British Computer Society Primary Health Care Specialist Group
Dr Ahmad Risk, Director, British Healthcare Internet Association
Dr Joseph Goodman, British Naturopathic Association
Jonathan Hartley, Founder member, Cancer Counselling Trust
Dr Ross Anderson, Chair, Foundation for Information Policy Research
Denise McDowell, Director, George House Trust
Derek Bodell, Director, National AIDS Trust
Paul McCrory, Chair, Network of Self-Help HIV & AIDS Groups
Gary Alessio, Director, Pan London HIV/AIDS Providers Consortium
Roger Goss, Director, Patient Concern
Vanessa Bourne, Chairman, Patients' Association
Elisabeth Crafer, Director, Positively Women
Frances Blunden, Director, Prevention of Patient Abuse Network (POPAN)
Simon Davies, Director, Privacy International
Ruth Webb, Chairman, UK Coalition of People Living with HIV & Aids

14 February 2001