Improvements to the NZ Cancer Registry

Media Release

8 April 2011

Improvements to the NZ Cancer Registry

A letter has been sent to 14,689 medical practitioners to ensure they are aware of the proposed improvements to the NZ Cancer Registry, announced by Minister Ryall in early February. The letter was sent by the Cancer Registry Board.

The changes, once implemented will make a remarkable difference for health planners, clinicians and patients alike. The Registry Board believes it will turn the New Zealand Cancer Registry into a much more valuable tool in the fight against cancer, the biggest killer of New Zealanders.

The Board is in the early planning process of implementing the recommendations of the External Review of the existing registry by an International Review Panel. It is making good progress, and expects that a developed plan will be in place within six months.

The Board wants to be sure that the project is understood and supported by clinicians as they will initially be asked to enter data into it. Eventually it is hoped that most, if not all, of the clinical data required by the Registry and other cancer information related systems will be routinely collected by public and private hospitals as a result of the National Cancer Information Project, and then automatically passed on electronically.

Until this situation has been reached, some of the clinical data required will need to be collected from clinicians involved in providing care for cancer patients.

The Cancer Registry Board is sensitive to concerns that the collection of clinical data on cancer registrations will add to the administrative burden on clinicians. It is the Board’s intention to ensure that the data will be collected electronically, using user-friendly systems taking a minimal amount of a clinician’s time

The upgrade of the Registry is an initiative of Cancer Control New Zealand. In early 2010, this advisory body to the Minister of Health commissioned an External Review of the New Zealand Cancer Registry. The International Review Panel made four major recommendations:

1. That there should be changes to the governance of the New Zealand Cancer Registry. These changes have already been made with the establishment of the Cancer Registry Board, which has representatives from Cancer Control New Zealand and the Director-General of Health. The Board has appointed a Clinical Advisory Group to assist it in making decisions that are in the best interests of cancer patients.

2. That basic clinical data should be collected on all cancer registrations. The essential data currently missing is clinical stage. Without this information, it is impossible to calculate the survival of cohorts of patients, and therefore to measure the impact of screening programmes and new treatments. Survival figures are also required for international benchmarking, so we can see how New Zealand is performing in comparison with the rest of the world.

3. That pathological data should be reported to the Cancer Registry in synoptic format. The Cancer Registry Act 1993, which mandated that a copy of all pathology reports containing a cancer diagnosis should be forwarded to the Registry, was an enormous step forward. Now we are saying that pathology reports should be in the form of a list which includes all the important parameters for that particular cancer, including relevant biomarkers. This type of reporting is already supported by the Royal College of Pathologists of Australasia, which is systematically developing synoptic reporting models for all cancers. The Cancer Registry will use the ones that are already available, and will adopt others as they are released.

4. That data held on the Registry should be much more accessible to medical practitioners and health planners. The aim is that we should have an on-line Cancer Registry similar to the one in New South Wales by the middle of 2012. This will allow clinicians to easily view data on their own patients, and to find out the baseline data on individual cancers which is an essential requirement for designing research studies. Health planners will be able to view contemporary data on cancer demographics in New Zealand, so effort and expenditure can be focussed on the areas of greatest need.

The upgrade of the Cancer Registry is a separate project to the Ministry's National Cancer Information Project, but the two projects are highly complementary.

Regular updates about the project will be posted on the Cancer Control website at www.cancercontrolnz.govt.nz.

ENDS

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