The Hong Kong Cancer Registry is population-based. It is a member of the International Association of Cancer Registries (IACR).
Our main concern has been the incidence and mortality rates of cancer in the Territory. Basic demographic data, information on the site (topography) and histology (morphology) is continuously collected. Staging and survival information has been starting to collect in recent years. Analysis of this information demonstrates variations in cancer distribution in Hong Kong and thus provides a basis for comparative geographical, epidemiological and clinical research. We contribute regularly to 'Cancer in Five Continents', a publication of the IACR.
We have access to most hospital/laboratory cancer data in both private and public sectors. We extract data on clinical and histopathological diagnoses in cancer cases. There are a number of channels through which data is collected:
(1) Clinical Oncology centres in Hospital Authority Hospitals;
(2) all Pathology departments of Hospital Authority Hospitals and Department of Health;
(3) discharge summary from all the Hospital Authority hospitals;
(4) case summaries from Radiotherapy departments in the private sector;
(5) most Pathology departments/institutes in the private sector;
(6) registered deaths from the Births, Deaths Marriages Registry of the Government; and
(7) voluntary notification from medical practitioners.
Notifications from the above sources amounted to about 200,000 separate entries per annum. All extracted data are then coded and checked for eligibility by series of comprehensive cross-checking programs with microcomputers before they are registered. We enter and update all valid data in our cancer database. Benign and unspecified brain tumors are excluded in the registry. Multiple neoplasms for the same person are counted separately. The analysis is primarily based upon cases occurring and being diagnosed in the territory. In recent years, around 22,000 new cases and 11,000 cancer deaths are reported yearly.
When data are collected, specific information identifying the individual patient is needed to check for duplicate registrations. Otherwise, the data would be inaccurate and unsuitable for analysis. The Government's effective Personal Data (Privacy) Ordinance is designed to protect the privacy of the cancer patient and the use of the related information. It was stated in Principle 3:
Personal data shall not, without the prescribed consent of the data subject, be used for any purpose other than: -
(a) the purpose for which the data were to be used at the time of the collection of the data; or
(b) a purpose directly related to the purpose referred to in paragraph (a).
In the mean time there is an exemption clause for 'Statistics and Research' under Section 8.62:
Personal data are exempt from the provisions of data protection principle 3 where:-
(a) the data are to be used for preparing statistics or carrying out research;
(b) the data are not to be used for any other purpose; and
(c) the resulting statistics or results of the research are not made available in a form which identifies the data subjects or any of them.
All our staffs understand and are bound by the Privacy Ordinance before beginning work with the Registry. All data are surrounded with appropriate security and no un-authorized person is allowed to access the computer system.
For more information, please visit the Office of the Privacy Commissioner for Personal Data, Hong Kong homepage at www.pco.org.hk.