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Home / New Zealand

<i>Dialogue:</i> Blame the enthusiasts for screening debacle

John Roughan
By John Roughan
Opinion Writer·
20 Apr, 2001 11:55 AM5 mins to read

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By JOHN ROUGHAN

The witchhunt for those who set up a defective cancer screening programme should take a closer look at the report of the Gisborne inquiry. It does not name names but it points the blame fairly clearly at non-medical crusaders for the cause.

And one culprit is all but named. She is now the Prime Minister.

After dealing exhaustively with the deficiencies of the Gisborne laboratory, and concluding that it might not be the only black spot on the national screen, Ailsa Duffy, QC, and her committee begin (155 pages in) to ask how an unsound programme ever got off the ground.

The question leads them all the way back to the report of the Cartwright inquiry in July 1988 and the cervical smear testing drive that followed it.

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"Essentially a cervical screening programme is a medical programme," the report says.

"Medical practitioners with specialist qualifications and experience in public health and epidemiology know what is essential and what can safely be left out."

However, this programme began "with a misplaced focus on the number of women having smear tests at the expense of other components of the programme." Its design "was influenced by non-medical persons who perhaps failed to recognise the essential medical components ... "

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In August 1989, more than a year after the Cartwright report, an unnamed Minister of Health (Helen Clark) was getting impatient. On August 25, she sent a memorandum to her officials which the Gisborne report reprints at length.

Citing "concern among those groups who have an interest in the success of this programme," Helen Clark wrote:

"There has been too much emphasis placed on the development of the national register and computing system necessary to operate the register and recall system, at the expense of action on developing smear-taking programmes."

The memorandum emphasised that money voted by the Government for the programme was intended to reach women who were not yet having regular tests. The register and recall system was of secondary importance.

That, says the Duffy committee, was "understandable" but "not ultimately helpful ... There was no point in encouraging women to have smear tests taken when their tests were being read at laboratories whose performance was accepted on trust and may have been performing inadequately."

That must have been well known at the time. Population screening was, and is, quite contentious in medical and health policy circles. Today New Zealand screens only for cervical and breast cancers.

The one thing both sides will tell you is that unless screening is done very well, it is probably better not to do it at all. Errors give either needless alarm or false comfort.

To do it very well means much more than urging healthy people to undergo regular tests. It requires an elaborate medical superstructure of trained test readers (top pathologists told the Gisborne inquiry their technical skills were not up to it), routine quality-assurance checks in laboratories, a reliable record of results and a recall system for cases needing further attention.

Most important, it seems, a programme needs a national register of all test results and case records so it can be properly monitored, regularly audited and independently evaluated.

Smear test reading is such an imprecise art that even top laboratories, such as that in Sydney which reread the Gisborne results for the inquiry, appear in the report to err on the side of needless alarm.

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In New Zealand the interests of the cervical smear testing drive overrode all other considerations. Newspapers were sometimes scolded for even publishing letters that might undermine women's confidence in the programme.

The Gisborne report calls the initial programme unbalanced.

"Although steps were later taken to remedy the systemic problems created by this imbalance," it says, "even today the programme has not fully recovered from it."

Ailsa Duffy is no Peter Mahon. The late Erebus commissioner might have described the absence of proper medical monitoring and auditing as "a cancer at the core of the screening programme, a hidden malignancy that would eventually reveal itself somewhere in the anguish we heard at Gisborne."

And he might have said the root of the cancer lay in the excesses of patient confidentiality and informed consent that were the legacy of the Cartwright inquiry. Even the language of Ailsa Duffy becomes less tepid on the damage done in the name of patients' rights.

When eventually a national cervical screening register was established by act of Parliament, the statute gave women the right to refuse to let their tests results be forwarded to the register. And identifiable case information contained in it was not readily available for the programme's evaluation.

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The Gisborne inquiry ran into the statutory block itself when it tried to assess the performance of other laboratories

Says the report: "The choice for the programme is stark. Effective evaluation can not be guaranteed if women's consent is required. If the right of an individual is to predominate, the safety of all participants is potentially at risk."

As things stand, it says, women are being given an illusion of consent. They are being misinformed by the programme's written material which suggests monitoring and evaluation are being done.

"Women should be told the monitoring and evaluation now carried out is not able to detect misread smear tests. Evaluation teams of medically qualified people must be given unhindered access to now protected information ... without the need for consent from the subjects or ethics committees."

Ethics committees, another creation of the Cartwright era, are evidently claiming jurisdiction over medical evaluations as well as research projects. The committee says that has to change; evaluations are part of treatment these days.

And it takes obvious delight in pointing out that the unauthorised McIndoe investigation which led to the Cartwright inquiry could probably not have been approved by today's ethical committees and requirements for patient consent.

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If the Cartwright report was the beginning of the new age health culture of the 1990s, perhaps the Gisborne report will come to mark the return to sanity.

Full report of the Inquiry

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