3 Ways Your Health Data Could Help the Next Patient, According to an Australian Nephrologist

Every visit to a hospital leaves behind more than a diagnosis.

Blood tests, scans, prescriptions, medical histories and treatment outcomes all generate information that becomes part of a patient’s health record.

But once that information is combined with thousands of other patient records, it can begin to tell a much bigger story.

Professor Stephen McDonald, a nephrologist and clinical epidemiologist, has spent almost three decades working with the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), a nationwide clinical quality registry that collects and analyses information about kidney replacement therapy across both Australia and New Zealand.

His work has focused on turning decades of dialysis and transplant data into practical insights about patient outcomes, and where the health system can improve.

He is currently the Director of Strategy and Policy and Executive Officer at ANZDATA, and was named a Member of the Order of Australia in 2025 for his service to nephrology.

In an interview with The Epoch Times, McDonald says health data can answer questions that cannot be addressed in any other way.

Professor Stephen McDonald, Executive Officer of the ANZDATA Registry and nephrologist. (Courtesy of Adelaide University) — Professor Stephen McDonald, Executive Officer of the ANZDATA Registry and nephrologist. Courtesy of Adelaide University

He outlined three ways health data can be used in modern healthcare.

1. From Individual Records to System-Wide Insights

An individual medical record can describe one patient’s treatment. A national registry can reveal what happens across an entire population.

Individual hospitals only see their own patients, while registries like ANZDATA can identify trends across hundreds of facilities over decades.

For instance, McDonald said registry data has shown dialysis demand growing unevenly across Sydney, with particularly strong increases in parts of western and south-western Sydney.

National data can also expose disparities within the health system. One example is kidney transplantation for Aboriginal and Torres Strait Islander Australians.

Aboriginal and Torres Strait Islander people make up about 3.8 percent of Australia’s population, but account for 11 to 12 percent of Australians receiving dialysis, reflecting a disproportionately higher burden of kidney failure.

ANZDATA research helped pinpoint where a key disparity in transplantation occurred.

“The block was in getting onto the waiting list,” McDonald said.

“Once you’re on the waiting list, the chances of getting a transplant were about the same whether you’re Indigenous or non-Indigenous.”

That distinction was important. Rather than suggesting the main problem occurred when donor kidneys were allocated, the data indicated that barriers existed earlier in the transplant pathway.

These findings contributed directly to the establishment of the National Indigenous Kidney Transplantation Taskforce (NIKTT) in 2019.

The Taskforce’s work has included improving data collection around transplant waitlisting, investigating cultural bias in kidney care, and trialling new models of care designed to improve access to the transplant pathway.

It has also supported Indigenous Reference Groups at transplant centres, bringing Aboriginal and Torres Strait Islander patients and health workers into discussions about how services are designed and delivered.

McDonald said it shows how data can affect how health systems can adapt, going beyond simply identifying trends.

2. Building a Holistic Understanding of Health

Health data also provides perspectives on what a diagnosis may mean beyond the condition itself.

While ANZDATA focuses on kidney disease, McDonald said kidney health cannot be understood in isolation.

“Kidney disease, heart disease, and diabetes are very closely interrelated,” he said. “Diabetic kidney disease has been the most common cause of people starting dialysis in Australia.”

This reflects a broader reality: many Australians live with “multimorbidity”—having two or more long-term conditions.

According to the Australian Institute of Health and Welfare (AIHW), roughly 38 percent of Australians (9.7 million people) lived with multimorbidity in 2022, often resulting in lower quality of life and higher care complexity.

Understanding these overlaps requires linking datasets together.

In one milestone study, ANZDATA linked its records with cancer registries to measure cancer risk following kidney transplantation, a procedure requiring temporary immune suppression so the body does not reject the donated kidney.

The study revealed colorectal cancer occurred about 2.5 to 3 times higher in transplant recipients than in the general population, while breast and prostate cancer risks showed no increase.

“That’s actually really useful information,” McDonald said. “If your risk of breast cancer is no higher than the general population, then you can just have the same screening process.”

3. Turning Information Into Active Care

For McDonald, collecting information is only useful if those insights are acted upon.

“We collect a lot of data, but we generally don’t use it,” he said.

The challenge lies in having information analysed by the right people at the right time, and feeding those findings back into the wider health system.

This concept is known as a “learning health system”–one where routinely collected patient information is used to identify problems, improve care, and then measure whether those changes work.

“We collect an enormous amount of data,” McDonald said. “It’s critical to use it to improve healthcare.”

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