In a small motel room, about 1,000km from his home, Robert "Bongo" Sagigi leafs through a list of names he has written in a pocketbook.

They belong to 53 people from communities in the Torres Strait he says have died this year from medical conditions that may have been treatable with earlier detection.

Uncle Bongo, an elder of the Wakaid clan of Badu Island, is in Cairns in Far North Queensland awaiting a specialist appointment for a heart problem.

His stay at the motel is interspersed with trips to the private hospital up the road where he undergoes several hours of renal dialysis every few days.

Diabetes rates in the archipelago, separating the northernmost point of the Australian mainland from Papua New Guinea, are among the highest in the nation.

Cardiovascular disease, kidney failure, cancer and rheumatic heart disease are also widespread — and fatal.

System 'failing our people'

Across Queensland, the rate of potentially avoidable deaths fell from 25 per cent at the turn of the millennium, to 17 per cent in 2021.

It remained as high as 50 per cent across the Torres Strait and Cape York over that time, according to Queensland Health data.

Mayor of the Torres Strait Island Regional Council Phillemon Mosby says about four to five people across the Torres Strait and Northern Peninsula Area succumb to preventable disease each week.

"These are basic health issues" Mayor Mosby says.

"If they're managed, or there's a level of investment for preventative health, we wouldn't see a very high rate of avoidable and preventable deaths."

Health Minister Shannon Fentiman commissioned a review of the Torres and Cape Hospital and Health Service (TCHHS) in response. 

The first report from the TCHHS investigation was published last month, with a second part on cultural safety for staff due later this year.

Queensland Health accepted the investigators' eight recommendations.

The review found the ongoing higher rate of potentially avoidable deaths in the Torres and Cape is consistent with poor outcomes for First Nations people across Queensland and identified a need for a greater focus on primary health care.

'We need answers'

The Zenadth Kes coalition of Torres Strait Islander leaders wants a Commission of Inquiry with the power to compel witnesses to give evidence and legal protection for whistleblowers.

Mayor Mosby says there is frustration the government commissioned an investigation "to tell us what we told them".

"We need to have answers … [and] to hold somebody accountable [for the deaths]," he says.

At the heart of the issue is the Torres Strait leaders' demand for Queensland Health to reinstate a healthcare model they argue was proven to work.

The Torres Model of Care was developed in the mid-1990s — when a health strategy document described the gap in life expectancy between Torres Strait residents and non-Indigenous Australians as a "horrific inequality".

At the time, a quarter of adult Torres Strait Islanders suffered from diabetes, four in 10 deaths were from heart disease, and rates of sexually transmitted disease were up to 70 times the state average.

Uncle Frank Cook, an elder from Erub island, was working in primary health care when the model was developed.

Also known as Bungie Tarou Kuk, he managed primary health clinics that operated across the Torres Strait.

Under the Torres Model of Care, his staff would go out into each community "as a team".

"We had the nurse, we had a diabetes educator, we had a nutritionist, we had an endocrinologist, and then we had a couple of [Indigenous] health workers," he says.

A lack of data from before the mid-1990s prevented the investigation into TCHHS from analysing trends in First Nations health across the region over a 40-year period.

But Dr Barbara Schmidt, an expert on systems of care in remote Indigenous communities, says the Torres Model of Care paid dividends.

"We know there was progress at that time because we have studies and papers published by researchers like Dr Robyn McDermott who implemented randomised controlled trials of chronic disease interventions," she says.

"The [data] systems may not be mature enough to show us that systematic change, but what people are feeling in the community is they are going to too many funerals."

Model origins

The TCHHS investigation report found while the Indigenous health worker-led model had structurally remained in place in the Torres Strait and Northern Peninsula Area, the role had become "more clinically focused over time", leaving them "feeling disempowered".

Officially, the Torres Model of Care is still referred to in TCHHS governance documents.

In practice, local leaders say it has been "dismantled".

Dauareb descendant Sean Taylor, then 18, became an Indigenous health worker in his home community on Mer (Murray Island) in 1996, when the Torres Model of Care was getting off the ground.

He is now a professor of Aboriginal and Torres Strait Islander health and the director of Onemda, an institute at the University of Melbourne, as well as a director on the Torres Health board.

Professor Taylor credits the model with achieving a 41 per cent reduction in hospitalisation rates, a reduction in amputations, the elevation of many First Nations health professionals into senior leadership and clinical roles, and better community consultation.

He argues Queensland Health should hand its primary health responsibilities – and the funding to deliver them – over to community-controlled health organisations.

Professor Taylor says that would allow TCHHS to focus on running acute care at its four hospitals, or for it to be subsumed entirely by the larger hospital and health service in Cairns.

In 2014, the Torres Strait and Northern Peninsula Area health district was merged with that of Cape York to form TCHHS.

Professor Taylor says new executives "had their own interpretation" of the model of care and "didn't truly understand the actual essence of what it was looking at … which was recalling patients back".

Changes in the model of care and a sharp decline in the number, and influence, of Indigenous health workers have not gone unnoticed at a community level.

Aunty Abigail Harry, 70, says the demand for its reinstatement is a matter of sovereignty.

An elder of the Kulkalgal nation, she too requires dialysis and has had a kidney transplant.

"The model worked for the people, it's workable and it's doable, because you have your own people in the frontline," she says.

"The Aboriginal and Torres Strait Islander health workers … were the buffer between the community and the hospital, primary health and the hospital itself."

Calls for a split

The Zenadth Kes Coalition and the community elders want TCHHS to be split back into separate services for Cape York and the Torres Strait.

High among their list of reasons is the Torres Strait's porous international border with PNG, where a long-standing treaty permits local travel between villages on either side.

"How can we have a health model imposed on us when we're nowhere like anywhere else in this country?" Mayor Mosby says.

With the Queensland election now a month away, Torres Strait Islanders want to know how the government and opposition would reform health care in their region should they take office.

"All the advice I have received is that separating the Torres and Cape would not lead to better outcomes," Health Minister Shannon Fentiman says.

"The health services would be too small and you would not attract the staff needed to get good, safe clinical practice."

Opposition leader David Crisafulli has not ruled out separating the two regions' health services if elected.