Background Material about Cancer Informatics

United Kingdom

Clinical Oncology

Cancer Scenarios from Scottish Registry, potted summaries of common cancers, future trends, resource implications etc

International Union Against Cancer global cancer organisation with members and activities covering all aspects of cancer control

DoH Circular 2002: Cancer waiting times

NHSIA Cancer pages including National Service Framework

Centre for Cancer Epidemiology Christie Hospital Manchester

DoH National Service Framework page, including NSF for Cancer

NSF for Cancer Assessment #1 Dec 2001 report on joint national review by Commission for Health Improvement and the Audit Commission on progress with NSF for cancer since 1995

UK Cancer Research Infrastructure

NHS Lifehouse and London Lifehouse London cancer networks

UK Association of cancer registries

NHS Cancer dataset

Psychosocial Oncology

Macmillan Cancer Relief charity that provides nurses trained in terminal care and also in psychosocial aspects of oncology

NHS survey of cancer patients and their impression of the service

The Samaritans charity dealing with people in crisis, especially those contemplating suicide

Ethical & Legal

Access to Health Records Act 1990 (c.23) governed the right of individuals to access and correct medical records during their lifetime and after death; NB now only applies to rights of access to records of dead people

HSG(96)18 NHS guidance on the Protection and Use of Patient Information

The Caldicott Report 1997 report commissioned to review how patient information is used in the NHS

Data Protection Act 1998 governs rights of a living individual to know and control who keeps data about them, whether computerised or not; supercedes DPA 1984 and most of Access to Health Records Act 1990

Issues of consent with cancer registries Oct 2000 BMJ editorial and subsequent responses

Confidentiality: Protecting and Providing Information guidance for doctors from the General Medical Council

Share to Care 2002 report of joint NHS - Consumers' Association public consultation exercise to find out what people want or expect

NHS IPU project to investigate pseudonymisation options invitation to tender, August 2001

NHS patients to have right to prevent research access to their EPR article in Guardian October 8th 2002

OMNI Confidentiality Resource summaries of and links to significant resources

USA

Clinical Oncology

ICD-O version 3 and also from the WHO site

TNM Version 6 UICC and AJCC classification of tumours

Northern New England Cardiovascular Study Group

NCI Center for Bioinformatics (USA)

Centrewatch Clinical Trials Listing Service

Psychosocial Oncology

Association of Oncology Social Work concerned with all psychosocial aspects cancer care

Ethical & Legal

US Department of Health and Human Services HIPAA - Health Insurance Portability and Accountability Act 1996

About NHS Information Technologies

Protti Report Implementing Information for Health: More challenging than expected ?

NHS IT web sites list of links