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.
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.
“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.
This column is published for information purposes only. It is not intended to be used as medical advice and should not be relied on as a substitute for independent professional advice about your personal health or a medical condition from your doctor or other qualified health professional.
REFERENCES
