New Zealand has a specialist child cancer register that uses a more advanced coding system than the existing national cancer register.
The National Childrens’ Cancer Register went live in April after more than two years of planning.
The database is an application on the health intranet and Starship hospital child oncologist David Mauger says its origins lie in a visit by a British consultant in 1999. “He recommended the number of child cancer treatment centres be reduced from five to three and that a child cancer register be established.”
New Zealand already had a national cancer register, but a separate one for children was a new development and had different requirements.
When the health ministry gave the go-ahead, “it was decided to develop the system as an online application”, says Mauger, who spoke on the subject at the Health Informatics New Zealand conference earlier this month. The aim was to have “a client list of all children from the three cancer units, in Auckland, Wellington and Christchurch, and it needed to be secure, web-based and accessible from desktops”.
Patient consent was not required for the database, but families of the children in it are entitled to view and receive a printout of the information recorded about them. Any research to be done using the data will require clearance from the ethics committee that governs such matters.
The children’s register uses a different data recording standard to the national one, Mauger says. “We use ICD-O [International Classification of Diseases — Oncology], whereas the national register uses ICD-10.” Mauger says the coding in ICD-O is more detailed and there are more than 30 fields to be filled in. “ICD-O is the system used by most paediatric child registries and is used by the Childrens’ Oncology Group, a US-based group which we belong to.”
There are more than 600 records on file and Mauger says the ultimate goal is coverage of all children diagnosed since January 2000. “The application is built using Microsoft architecture, with the Access database stored on a Windows 2000 server, which will possibly be upgraded to SQL Server in the future. “The interface is simple and uses active server pages.”
It’s not bleeding edge, but it works, Mauger says. “People have said ‘that’s boring, old fashioned IT’, but that’s how it was done.”
The biggest hurdle to getting the register running was finding a host, he says. At present, Telecom, which hosts the national health intranet, is hosting the register for free, Mauger says.
Telecom spokesperson Suzanne Pollard says Telecom’s commitment was for the pilot phase of the register project, which is to end soon. A decision on whether the free hosting will continue is yet to be made, she says.
Mauger says Telecom is considering setting up a shared hosting secure service for small users like the child cancer register.
“If it does, it will be within our budget to be hosted on it but if not, we’ll have to look for another ISP.”
The child cancer register was developed by Matt Rowe of Webhead.