This appeared last week:
Safety in numbers: why honesty matters in medicine
Everyone
thinks more openness in medicine is a good idea. And our world leading IVF and
joint replacement projects are great examples. But information sharing doesn’t
always produce better outcomes for doctors and patients.
Steve Robson
21 June, 2025
If you have
any interest in health you’ve probably heard the word “transparency”. It now is
inescapable and has been called for in everything from the cost of specialist
visits and private health insurance, to the cost of health technology, and in
healthcare outcomes.
Australia has
two world-leading examples of transparency in healthcare – and a notable
failure.
If you’re a
patient what, exactly, is transparency and how can it make the medical treatment you receive better?
Transparency
is all about making the healthcare system understandable not only for patients
but also for doctors, healthcare workers, governments, indeed the whole
community. It can involve everything from the costs of care to the outcomes of
operations. Transparency guides good decision-making in your healthcare.
When
transparency is missing it can be catastrophic. One terrible example was with
the outcomes of heart surgery for British children in the 1990s at a hospital
in Bristol, where the death rates were probably double that for England as a
whole. Had the public and administrators had transparency around the hospital’s
results it is possible that the lives of 35 children could have been saved.
A celebrated
example of surgical transparency is Australia’s National Joint Replacement
Registry. Well over 100,000 hip, knee and other joints are replaced in
Australia every year. Our results are world-leading and this is due, in no
small part, to the registry.
Surgeons
complete information sheets about every joint replacement they perform, which
includes information not only about the artificial joint itself but the age and
health of the patient undergoing the procedure. This information is fed into a
complex computer system for analysis and the results are made public. The
process allows a careful matching of patient characteristics and devices, along
with surgeon and hospital, to review the outcomes of this surgery.
When hip and
knee replacement surgery was still in its infancy, problems with implants were
relatively common, leading to the need for patients to go back to the operating
theatre to have their implants removed and replaced – a potentially traumatic
and resource-intensive process.
“Revision
rates following primary joint replacement were pretty high,” explains
orthopaedic surgeon Professor Paul Smith, the current clinical director of the
registry. “With that burgeoning epidemic of prosthesis loosening and wear,
people were conscious that they really needed to understand better which
prostheses were actually performing and which weren’t.”
The registry
was the brainchild of the Australian Orthopaedic Association, the peak body for
orthopaedic surgeons. The leadership of the profession recognised the need for
all surgeons to have unbiased and real-world information about the implants
being placed in Australians’ knees and hips to avoid adverse outcomes.
This level of
transparency was unprecedented in Australian healthcare and was embraced
widely.
“We have 100
per cent of all joint replacement reported in Australia,” says Professor Smith
with pride. “So there’s 100 per cent of surgeons who undertake joint
replacement, and also 100 per cent of the hospitals with replacement occurring
in them all engaged in the process.”
There is no
legal obligation to participate in the registry – it is powered by the goodwill
and passion of surgeons to offer their patients the best possible results of
what are very big operations. Australians should be grateful for such an aid to
transparency.
While the
outcomes for patients of every single hip or knee implant can be individually
tracked, the opposite was true for gynaecological mesh implants. This lack of
transparency was uncovered during a Senate inquiry and related class action
against the manufacturers of pelvic mesh.
The final
report of the Senate inquiry found that, in contrast to the joint replacement
registry, there was “no clear indication of how many women have had
transvaginal mesh implants in Australia or how many women have experienced
complications as there is no single source of information”.
This made the
task of helping women who had experienced adverse outcomes – some lifelong – of
mesh implants very challenging. It led the inquiry to recommend the
“establishment of a registry for all high-risk implantable devices”.
What is
notable about the Joint Replacement Registry is that it is entirely an
initiative of surgeons and was not imposed by the government. Experience in the
British National Health Service, much of it in the aftermath of the Bristol
cardiac surgery disaster, suggests that government attempts to enforce
transparency measures can be ham-fisted.
In his
landmark book The Naked Surgeon – the power and peril of transparency in
medicine, British cardiac surgeon Samer Nashef delved into the pitfalls of
poorly thought-through transparency measures.
“The
government decided to find ways of reducing costs by having expensive hospitals
learn from cheaper ones,” he explained. The exercise began with heart surgery.
Unfortunately, the economic analysis uncovered an important but perhaps
unexpected truth.
The reason
that some hospitals were so “cost-effective” in treating complex heart problems
was a simple one. “Many died on the operating table,” he wrote. “This is a very
inexpensive pathway: it results in a short hospital stay, no intensive care
bills, and no recovery costs.”
This is a
significant lesson about transparency: include those providing care – and the
patients receiving care – in planning any transparency measures. This is
particularly true when either outcomes of procedures are considered or the
costs of care are under the microscope.
Indeed,
according to a review of transparency in the Journal of the American Medical
Association, “public reporting of healthcare system performance is promoted as
a means for enhancing the value of healthcare by improving quality and lowering
costs … but little evidence of broad and sustained improvements”.
IVF treatment is another area where calls for transparency are
being made. Yet Australia leads the world in this area with our newest
large-scale transparency initiative – the Your IVF Success website.
While the
Joint Replacement Registry aims to provide transparency for surgeons and
hospitals, the IVF website is pitched squarely at patients – although the
profession takes careful note of its findings.
“The Your IVF
Success website was launched in 2021,” says Professor Georgina Chambers who
runs the project. “It came about to improve transparency around assisting
patients in getting independent information about IVF success rates.”
Long before
the website was launched, Professor Chambers’ team collected information about
IVF outcomes and provided a yearly academic report. “It’s the oldest IVF
registry in the world and probably the most comprehensive,” says Professor
Chambers.
The
information in these reports was presented in a way that was difficult for
patients to understand and was of little value in guiding choice. It was a very
opaque transparency project.
IVF is
performed at a similar rate as joint replacement, with well over 100,000 IVF
procedures performed each year. As with the Joint Replacement Registry, the IVF
website is not legislated and is run by the voluntary contributions of IVF
doctors.
“Because it’s
voluntary, I have to get consent from every single clinic to publish their
results,” says Professor Chambers. “The way it works is that I give them their
results – exactly what’s going to appear on their website for their clinic and
benchmark it to the national average.”
Information
from the IVF transparency website is only one factor in the way patients choose
their doctors and clinics, Professor Chambers says.
“With public
transparency … everybody interprets statistics so differently. They might
think, oh yes, but that doesn’t relate to me or my doctors, or my friend got
pregnant at that clinic so I want to go there.
“It’s just
been overwhelmingly positively accepted by consumers. We get 40,000 people to
the website every month. Now this just shows you the absolute hunger for
information on the web because it affects just so many people.”
One of the
important aspects of transparency on the IVF website is that it has strong
input from consumers. “We have a consumer advisory group made up of seven
people who have varying experiences of infertility, men and women who advise on
everything on the website,” Professor Chambers says.
“It’s been
absolutely made with consumer focus and was co-designed with them.”
The Your IVF
Success website won the 2023 Research Australia Award for data innovation.
The Joint
Replacement Registry now has a patient focus as well. “In the last decade it’s
been recognised that one of the important outcome measures is not just how the
device works, but what are the patient-related outcomes?” Professor Smith says.
“The registry
started to collect patient-reported outcome measures in 2018 and this really
provides another dimension.
The IVF
website that began as a data project for doctors became more useful to
patients. Picture: iStock
“While it was
set up to ascertain device performance, it’s actually the patient we treat and
we need to understand what patient outcomes are. The last decade has seen a
growth in the importance of patient-reported outcome measures such as
satisfaction, general health outcomes and outcomes related to the joint that’s
operated on.”
Professor
Chambers says that in its short history, her transparency website has supported
ongoing improvements in IVF care. “The multiple birth weight has dropped to the
lowest it’s ever been, so there is no indication that people are putting back
more embryos to improve success rates,” she says.
“While it may
not be due to your IVF Success website, every year – no matter how you cut the
data – the success rate from IVF is increasing.”
Professor
Smith acknowledges a similar effect of transparency from the Joint Replacement
Registry on orthopaedic surgery. “It provides surgeons with a lot of
information and an opportunity to look at where they can improve their
practice,” he says.
“Surgeons do
not want to be seen to be using devices which clearly have been identified as
being poor. The registry has identified better-performing devices, and so
surgeons will opt to use a better-performing device.”
Indeed, the
Australian registry has identified devices that yield results so poor that it
draws worldwide attention to them. “About 20 years ago the first one was
identified and that resulted in that device being recalled worldwide,” says
Professor Smith.
If Australia
is to build further innovation in transparency, what are the keys to success?
“My advice
would be that you’ve got to work with the industry as a collaboration,” says
Professor Chambers. “You’ve got to abide by certain principles that respect
patient and clinician autonomy. One of the key principles of transparency in an
industry is that you don’t interfere, you don’t create any perverse
incentives.”
This
principle came out strongly in the NHS reforms. Dr Nashef has warned that
ranking surgeons – without putting the work they do in broader context – puts
patients at risk. To avoid looking bad in public “league tables”, surgeons may
avoid operating on complex patients – often the ones who most need care.
“The greatest
risk to the patient in the publication of league tables is that surgeons start
to run away from high-risk surgery, and that is bad news indeed, especially if
you are such a patient,” Dr Nashef writes.
What lessons
can we learn from the successes – and failures – of transparency in the
Australian healthcare system? The information provided must be put in context
and be understandable by patients and it must not scare off doctors or
hospitals from participating.
“You’ve got
to get the senior thought leaders within the craft group behind the idea,” says
Professor Smith. “It’s really got to be something that is led from the front.
There has to be a champion group.”
Australia has
some world-leading examples of transparency that are guiding patient choices
and informing the best possible standards of healthcare. There is plenty of
scope for more, but we must not make mistakes such as those of the NHS. Let the
profession and patients, together, chart the pathway in transparency. That way
all of us will benefit in the future.
Steve
Robson is professor of obstetrics and gynaecology at the Australian National
University and former president of the Australian Medical Association. He is a
board member of the National Health and Medical Research Council and a
co-author of research into outcomes of public and private maternity care.
Here is the link:
https://www.theaustralian.com.au/health/medical/safety-in-numbers-why-honesty-matters-in-medicine/news-story/29a1492f8950de50762016a174be977d
Making sure that surgical outcomes
are reported fairly and reflect the difficulty and risk of surgical intervention
need to be carefully designed to ensure the outcomes we seek are achieved. It
is possible to put reporting systems together that are unfair and produce very
poor overall outcomes and put patients at risk!
This is a situation where listening
to as many experts as possible makes good sense, to get the system design
correct and the answers found valid!
David.