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Confidentiality


Preservation of the confidentiality of patients, doctors and hospitals has the highest priority for the Registry. It is essential to collect the names and addresses of patients for the following reasons:

  • to prevent multiple registrations of the same patient. 
  • to help identify patients for follow-up purposes, in a clinical setting.
  • to facilitate the clinical genetics service when consent is given.
  • to calcuate survival by linking with deaths.

The Registry is independent of all other agencies and does not share confidential information except with permission of the patient's doctor for ethically approved research, or to assist doctors in reviewing their own workload. The standard provisions for medical confidentiality apply to the Registry. It is also registered with the 1998 Data Protection Act, (registration no: FO866197) and its databases have been registered with the N. Ireland Ethics Comittees (ORECNI) All confidential information within the Registry is encoded, protected by security systems and destroyed when no longer needed. No publication of results will enable any individual to be identified. A document detailing confidentiality and rules for the issue of data is also available on this web page:  N. Ireland Cancer Registry Guidelines on Confidentiality and Issue of Data.

The Registry has published a letter in the British Medical Journal on difficulties obtaining consent from each patient for cancer registration: BMJ Letter.

Confidentiality of sensitive data such as health data is protected under the 1998 Data Protection Act and the Human Rights Act 2000.

Cancer Registration in many countries is a legal requirement.

Countries with Statutory Cancer Registration
Australia
Malta
Canada
New Zealand
Czech Republic
Norway
Denmark
Poland
Finland
Slovakia
Israel
Slovenia
Kuwait
Sweden
Latvia
USA

Advice indicates where this is not the case cancer registration can only proceed if (a) patient informed consent is obtained or (b) the data are anonymised. Both scenarios prove difficult for cancer registration:

a) Patient Informed Consent

It is important that patients are aware of the ways to which their personal data are used. These include managing their disease, medical audit to improve the quality of service provided, and monitoring of disease levels and patterns as occurs in cancer registration. Achieving informed consent poses serious practical problems. Questions, which need to be answered, include:

1. Who will ask for consent?
2. How will it be recorded?
3. How will non-consent be managed?

Patients are often completely traumatized by a diagnosis of cancer. The doctor giving the diagnosis is usually very busy explaining the disease, treatments and likely outcomes. Getting consent for cancer registration would be an additional administrative burden, which in many cases might not be included in a consultation. Evidence from other registries indicate that most patients (98%) will give consent but this is not requested or recorded in the 40% of cases.

Additionally many patients cope with their disease by denial. It could cause further distress to these patients to seek informed consent - see letter to BMJ. Requiring informed consent for cancer registration will result in an unquantifiable loss of data and a Registry of no value.

b) Anonymisation

Data in the N. Ireland Cancer Registry are anonymised as soon as possible and always before analysis. Anonymisation before the checking process to identify duplicate patients would result in many false registrations and a Registry that is inaccurate and not of any use.

Legislation

In England and Wales the 2001 Health & Social Care Bill allows the Secretary of State, based on advice of a Patient Information Advisory Group, to identify situations where sensitive information may be collected without consent. Based on annual application is covered by this bill.

In Northern Ireland a Privacy Advisory Committee was established in 2006.  They are aware of all aspects of Registry work. 

What the GMC say:  Ref: http://go.qub.ac.uk/MBbbc

General Medical Council Statement about cancer registries

"We fully support the work of cancer registries and of other research, epidemiology and surveillance, which is vital in protecting and enhancing the public health. We also believe that patients privacy and autonomy should generally be respected, and that systems for seeking consent, and for protecting privacy, through anonymisation or similar measures, should be adopted whenever that it is practicable. In some cases the current administrative and computer systems for disclosing or accessing identifiable data about patients for epidemiology and research prevent doctors from following our guidance on confidentiality published in September 2000.

We have accepted assurances from the UK Health Departments that systems for protecting patient confidentiality will be implemented as soon as practicable. In the light of those assurances, we have agreed that the practical difficulties that doctors face in seeking consent to disclosures ahead of the implementation of new systems will be taken into account if complaints about disclosures are made to the GMC.

We are revising our guidance Confidentiality: Protecting and Providing Information to reflect the new legal position in England and Wales, when Regulations are passed under the under the Health and Social Care Act 2001. We propose to reissue our guidance to coincide with the implementation of the first Regulations. We will also be publishing additional advice and guidance in a booklet of Frequently Asked Questions, which we will up-date regularly as Regulations under the Act are passed or withdrawn, and to reflect other topical issues".

www.gmc-uk.org/publications/gmc_news_archive/gmcnews3.pdf

The N. Ireland Cancer Registry has a patient information leaflet which explains about cancer registration.

Contact Information

N. Ireland Cancer Registry
Centre for Public Health, School of Medicine, Dentistry & Biomedical Sciences
Queen's University Belfast
Mulhouse Building
Grosvenor Road
Belfast
BT12 6DP

Tel: +(44)28 9063 2573
Fax: +(44)28 9024 8017
Email: nicr@qub.ac.uk

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