13 November 2017

Data delays hinder cancer register

Cancer Medicolegal

As the Department of Health delays the rollout of the National Cancer Screening Register yet again, clinicians are being urged to be aware that women’s clinical histories may be separated between state and national registers for several months. 

The transition from two-yearly Pap smears to five-yearly HPV testing has been almost universally praised as life-saving and cost-effective, but the rollout has been beleaguered by repeated delays and cost blowouts. 

Now another partial delay to the program has been confirmed by Department of Health deputy secretary Paul Madden in the October 26 Senate budget estimates hearing. 

As of December 1, women will begin HPV testing and the test results will be tracked on a national register. But the data migration of women’s histories from individual states and territories will not be collated until into the next year, with full functioning of the program promised by the first week of March. 

Several sources speaking to The Medical Republic, who asked not to be named, expressed concern that there was confusion over the staggered rollout, and limited guidance in terms of following up women in the transition period. 

This would be a particular concern for women from interstate or those new to the practice, for whom doctors may need to call state registries over the transition period to ensure they have up-to-date information to provide women with the most appropriate management. 

The full scope of the national program, including the ability to mail out reminders, the telephone and fax system, an integrated and complete history and the analytic capability to ensure women were put onto the right clinical pathway, would not be up and running until March, Mr Madden said. 

Women who have a positive result will be followed up within eight weeks, and other follow-ups take place 12 and 16 weeks after the test. By this stage, the complete program should be operating, Mr Madden said. 

Sources have expressed concern to The Medical Republic that women’s safety could be at risk if continued difficulties with data migration delay the rollout further, impeding the national register’s ability to send out recall notifications within those windows. 

Experts stress the responsibility to chase up abnormal HPV test results remains with the individual clinician. 

AMA president Dr Michael Gannon praised the introduction of the new screening program for both its individual and population-level benefits, but added vigilance was important over the transition. 

“Not to demean the important work of the registry, but the individual clinician has a responsibility for the results they collect,” he said. “As with any test, if it is a biopsy, pathology test or diagnostic imaging, the doctor who organises the test has a medicolegal responsibility to follow up the test results and deliver the results and the clinical information that goes with it.” 

Professor Steve Robson, president of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, echoed the sentiments, saying that despite the delays and frustrations, recent teleconferences had left the organisation confident the system would be running on schedule. 

“[The colleges involved] are all confident women will be safe in the transition period,” he said. “Is the delay compromising safety? Absolutely not. Is it annoying for everyone? Bloody oath.” 

But given the National Cancer Screening Register was one of the biggest projects the Department of Health had embarked on, he said teething problems were to be expected. 

Adjunct Professor Annabelle Farnsworth, medical director at Douglass Hanly Moir Pathology, said the launch might not have been perfect but the risk to women was “very small”. 

Those most at risk were the small number of high risk women moving across state lines during the transition and being lost to follow-up.