Child and Youth Mortality Review Committee

About Us

Privacy of CYMRC Information

As with all people who deal with health information, the CYMRC and its agents must adhere to the Privacy Act 1993 and the associated Health Information Privacy Code.

The purpose of the data collection*

Broadly, the purpose of data collection for the CYMRC is outlined in the New Zealand Public Health and Disability Act 2000 (Part 2 s18(1)(a) and (b)), which describes the CYMRC’s function to review and report to the Minster with a view to reducing the numbers of death and to continuous quality improvement.

Sources of the CYMRC data

The death of a child or youth is likely to be a difficult time for family members and so information is usually obtained from reliable ‘indirect’ sources such as health professionals and national databases, not directly from the family. Family are welcome to provide information if they wish to do so.

The legislation gives agents of CYMRC the authority to collect data however families should not feel coerced into to supplying information and it is essential that family members or others do not find the data collection process for the CYMRC intrusive.

Transfer, Storage, security, and accuracy

Data is treated with utmost care. It is not emailed but is transferred using a password, protected website, sending discs via registered courier post or by using a secure fax machine. Paper records are kept to a minimum and are stored in locked filing cabinets. Any documents which need destruction are destroyed by an approved Document Security Service.

Everyone involved with mortality review is encouraged to have their unique, complex password.

The database uses secure socket layer (SSL) connections for the transmission of data. This involves the encryption of the information transmitted between the web server and the web client, such that it will be unreadable by anyone intercepting it at any point between. It also allows the user to be certain that they are connected to the correct web server. SSL is widely used for online financial transactions by banks and companies around the world.

All agents of the CYMRC have to sign a confidentiality statement before they are appointed as agents and every three years thereafter. Agents who do not adhere to the confidentially requirements are liable to a fine up to $10,000.

The formal agreement (contract) that the Ministry of Health undertakes with the Mortality Database Group to run the CYMRC database outlines the requirements for the Database Group to manage the data safely.

The terms of reference of local Child and Youth Mortality Revew Groups describe how the groups maintain the secruty of the data.

Accuracy of information is important for the work of the CYMRC and families who are involved in a death may also want assurance that every effort is made to ensure the CYMRC data are accurate. The agreement (mentioned above) outlines the requirements for the Database Group to make every effort to ensure data is accurate.

The system used by the Mortatliy Database Group means that there is triangulation of data coming in from various sources (including family if they choose).

The Maori committee members of both CYMRC and PMMRC along with those of the Quality Improvement Committee (QIC) meet as a group at least annually and are available to consider issues about access to and security of the data in relation to Maori.

Disclosure of data

CYMRC data does not have to be released under the Official Information Act 1982.

CYMRC Data cannot be obtained by the Police and the Coroner (unless they are investigating a crime punishable by 2 years, or more imprisonment) or the Health and Disability Commissioner.

Reports to the Minister (which are released publicly) do not identify any individual.

All requests for CYMRC data (including those for research) are required to be in writing and are reviewed by a Scientific Group of the committee in accordance with the CYMRC Data Access Policy.

CYMRC and Protected Quality Assurance Activities (PQAA)

People involved in the CYMRC process may also be involved in protected quality assurance activities (PQAA), which are described in the Health Practitioners Competence Assurance Act 2003 and approved by the Minster. The purpose of PQAA is to improve the competence and practice of individual health practitioners.

The purpose of the CYMRC and the local groups is to review and report to the Minster on specified classes of deaths with a review to reducing the number of deaths in those classes. Thus the two processes are quite different, one focuses on improving the competence of individual health practitioners and the other on providing high level policy advice to the Minister.

However relevant information generated in a PQAA can be disclosed to the CYMRC or an agent unless one of the exemptions listed in Schedule 5 of the New Zealand Public Health and Disability Act 2000 apply [link to legislation].


* Headings adapted from Elisabeth Harding’s Privacy Framework.