Transparency is overdue
The introduction of this bill has spurred the IVF sector to finally start working towards disclosure of success rates for individual clinics – something it has always deemed inappropriate and too difficult to achieve in Australia.
The Australian Institute of Health and Welfare Amendment (Assisted Reproductive Treatment Statistics) Bill 2019 (bill) gives responsibility for the creation of a new public clinic performance database to the AIHW because this was the legislative lever which was available. Placing responsibility for a new consumer database in the hands of a Government agency would give it legislative protection.
The evidence at the inquiry favoured drawing on the Australian and New Zealand Assisted Reproduction Database (ANZARD) to provide consumers with clinic outcomes data.
ANZARD collects data from all 83 Australian fertility clinics and all 8 New Zealand clinics, to provide a national, de-identified summary of assisted reproduction outcomes.
The proposal to give ANZARD responsibility for publishing clinic outcomes for consumers would be a common sense approach - however it must be noted that there are no legislative protections underpinning ANZARD.
ANZARD is the product of a partnership between the Fertility Society of Australia (FSA) and National Perinatal Epidemiology and Statistics Unit (NPESU) at the University of New South Wales. Clinics are required to provide data to the ANZARD as part of their obligations under the Reproductive Technology Accreditation Committee (RTAC) code of practice. RTAC is a committee of the FSA.
The NPESU’s arrangement with the FSA has worked well to date, resulting in a robust and world-class database of de-identified performance data, though it must be acknowledged that it is a vulnerable arrangement. This vulnerability poses a risk should ANZARD also be tasked with a consumer disclosure function, given the industry’s historic reluctance to move in this direction (which is reflected in some of the submissions) particularly so if there is pushback from members or inevitable 'teething problems'.
I will accept the committee’s recommendation that the bill not proceed in its current form. I am prepared to wait and see how the industry publicly discloses clinic data by mid-2020. We can then assess what protections, if any, might be required to future-proof the ANZARD database, and ensure that its continued role in consumer disclosure does not rely solely on the discretion of private providers or a changing industry Code.
For the consumer information to be meaningful, it needs to provide the data in context – success rates for various age groups, infertility diagnoses and treatment. Issues for patients new to the IVF journey, such as unfamiliar terminology, can be dealt with without compromising the quality of data. The sector cannot shy away from providing a comprehensive dataset because it underestimates the consumer’s capacity to understand or desire for the full facts.
The disclosure of clinic data will complement the predictor tool for which the sector has secured funding and which it also hopes to roll out in 2020. The predictor tool will essentially let a women know her chances of conceiving through assisted reproduction, given her age and prognosis. Publishing clinic performance data, together with the predictor tool, will vastly enhance the information available to infertile Australians and give them a realistic view of their chances of conceiving through IVF and other assisted reproductive technologies, and to choose the clinic that will best meet their needs.
As detailed during the inquiry, and in the bill’s explanatory memorandum, the industry enjoys substantial taxpayer subsidies, with almost 70% of every cycle funded by the government, and infertile clients also pay exorbitant sums to try and achieve their dream of conceiving and taking home a child.
Fertility specialist Dr Richard Henshaw drew on the latest ANZARD report to illustrate why transparency of clinic performance was important. He gave the example of the live birth rate (chance of a baby) for a 35-39 year old woman varying from 30.5% at a top performing clinic to 2.5% at the worst performer.
If patients were aware of these outcomes, they would probably not choose to go to the clinic with an outcome rate of a live birth rate of 2.5 per cent … People who, quite by chance, choose a clinic in the fourth (bottom performance) quartile are going to undergo many more cycles of IVF, experience much more stress, have a much larger out-of-pocket cost and, of course, cost Medicare and private health insurers significantly more money.
It is only reasonable—and necessary—that this sector operates with full transparency and provides consumers with the fulsome information they need to make an informed choice about their treating clinic. Anything less is no longer acceptable.
Senator Stirling Griff