Glossary of common terms
Aggregated data - These data are summarised
into categories defined by one or more data items and presented in
tables of numbers of cases in each of the defined categories. These
data are available through the web based reporting module or on
request and do not usually require ethics approval. For
example, the numbers of cases of cancer grouped by five year age
group, or the rates of a particular cancer. In some cases
tabulated data can be considered potentially identifiable. The web
based module and tabulated data requests have addressed the issue
of potentially identifiable tabulated data by not reporting data
with cell sizes less than five.
Chief Health Officer refers to the Deputy
Director-General of Population and Public Health at the NSW
Ministry of Health.
Confidentiality Undertaking refers to the
agreement by the Chief Investigator of the project to preserve the
confidentiality of the data provided as per the conditions
described in the Chief Health Officers approval letter. The CI NSW
and where applicable the NSW Ministry of Health must confirm
receipt of the confidentiality agreement before any CCR data can be
released.
Data custodian is the organisation or agency
that is responsible for the collection, use and disclosure of
information in a dataset. The data custodian is responsible
for contributing to the guidelines and approval processes on the
use of the data, including communication with ethics committees and
where applicable input to the protocols surrounding data use.
De-identified unit record data may include
other data items on an individual person or case (excluding the
identified items) released under section 130 of the Public Health Act
2010 or the Health Administration Regulation 2010 under
clause 16(2). This release requires approval from the data
custodian, ethics committee and Chief Health Officer. Such
data could include, for example, the location of the cancer, the
cell type of cancer or the method of diagnosis. Potentially
identifiable items are unit record data items that may identify an
individual when provided at a fine enough level of detail
(e.g. individual age, month and year of diagnosis, specific cancer
type and individual country of birth), particularly if there are
few people in the population with a particular set of these
characteristics.
Demographic data refers to
information/variables (for example, address, date of birth, sex)
that can be used to describe or identify a person or event.
Please note that demographic data can also be used as a "linkage
variable", a term commonly used in the health context.
Ethics Committee refers to the NSW Population
and Health Services Research Ethics Committee. This committee has
responsibility over the ethical review of any research involving
data and statistics held by the NSW Ministry of Health and the
Cancer Institute NSW. This committee was constituted in accordance
with National Health and Medical Research Council Ethics Committee
guidelines, which protects the subjects of research and ensures
that ethical standards are maintained by reviewing and advising on
the ethical acceptability of research proposals. Please note that
if your project requires datasets other than those owned by the
aforementioned organisations it may also require approval from
additional relevant ethics committees.
Health information (according to section 6 of
the Health Records and Information Privacy Act 2002) refers to:
- Personal information that is information or an opinion
about:
i. the physical or
mental health or a disability (at any time) of an individual,
or
ii. an individual's
express wishes about the future provision of health services to him
or her, or
iii. a health service
provided, or to be provided, to an individual, or
- Other personal information collected to provide, or in
providing a health service, or
- Other personal information about an individual collected in
connection with the donation, or intended donation, of an
individual's body parts, organs or body substances, or
- Other personal information that is genetic information about an
individual arising from a health service provided to the individual
in a form that is or could be predictive of the health (at any
time) of the individual or of any sibling, relative or descendant
of the individual, or
- Healthcare identifiers.
Identified unit record data Examples of
identified items include: Registry number, name, alias, address,
date of birth, medical record number (URN), Medicare number, doctor
in charge of case, name and address of referring doctor and address
of general practitioner. Some items are never disclosed, such as
registry or Medicare number. These items are primarily used by the
CCR to verify a person's identity so as to prevent double
registrations. Identified information may be made available for
requests involving record linkage, patient recruitment and return
to notifier. Identified unit record data are released under Public
Health (General) regulation 2002 clause 20-Disclosing of
Information and the Health Administration Regulation Act 2010
clause 16(2) - Disclosure of Information. Release usually requires
approval from the data custodian and the consent of individual
record subjects (people) together with the approval of the ethics
committee and Chief Health Officer.
Linkage refers to linkage of CCR data with any
other data set such as the NSW Admitted Patient Data Collection,
NSW Registry of Births Deaths and Marriages, Australian Bureau of
Statistics, National Death Index, Australian Cancer Database,
privately owned dataset and/or a research dataset. Where such
linkages are required they are usually undertaken either by the
Centre for Health Record Linkage (include hyperlink) or the
Australian Institute of Health and Welfare (include hyperlink).
Small linkages between the CCR and a private or research dataset
comprising of no more than 100 records may sometimes be manually
linked by Cancer Institute staff.
Potentially identifiable data are those where
identifiers have been removed, but data items are included that
either singly or collectively may identify an individual e.g.
country of birth, postcode, Aboriginal status and age group. The
potential for this information to become identifying is higher when
dealing with small populations or groups with unusual or rare
clinical conditions
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