One of WA’s most established research institutes is reinventing itself and the way it does business.
It would be hard to find a longer or deeper entanglement between a donor and recipient in Western Australia’s charitable sector, but after almost 30 years there has been a separation of sorts.
Last month, the Telethon Kids Institute shed the name of the well-known TV charity fundraiser to become simply The Kids Research Institute Australia, reflecting wider ambitions and a need to remove confusion in the market.
Founded in 1990 by Fiona Stanley as the WA Research Institute for Child Health, it has been one of WA’s scientific leaders for decades and is the fourth biggest in the state by revenue.
In 1995, it became TVW Telethon Institute for Child Health Research, reflecting the significant backing of Channel 7’s Telethon event.
It was renamed Telethon Institute for Child Health Research in 2002 and Telethon Kids Institute in 2014.
Last calendar year, Channel 7 Telethon Trust remained the charitable organisation’s biggest donor, suggesting that two heavyweights in the sector remain very close after three decades of some form of naming association.
But with The Kids Research Institute aiming for a broader brief, including an office in South Australia, and Telethon expanding its recipient base significantly, it is understood both organisations felt it was time to put a bit of a gap between them.
Perhaps as a further signal of the diverging paths of the two organisations, it seems likely that Stan Perron Charitable Foundation will end up being The Kids Institute’s biggest donor this year, having last month committed $135.5 million over 10 years.
While the institute’s executive director, Jonathan Carapetis, did not link the huge Perron donation – possibly the biggest single such contribution in Australian history – to the name change, he did say it was the direct result of the strategic change for the organisation, which, arguably, the new branding represented.
Mr Carapetis said the institute was repositioning itself to deal with the way the research world had changed, with researchers currently spending about a third of their time applying for grants.
“[That’s] something that we in the research world are very familiar with [and] the people outside of it probably aren’t, and it’s built around the funding system for research in this country,” he said.
“And so, we have a system that’s basically supported by highly competitive, largely government research grants, and those grants are often fairly short term, often very focused around individual projects, and they are becoming harder and harder to get.
“As a result, research has become increasingly a career of survival, where people become focused on where the next grant is going to come from, rather than where the next big health advance is going to come from.”
Science at work in The Kids Research Institute Australia headquarters at Perth Children’s Hospital. Photo: Michael O’Brien
Mr Carapetis said workshops with the institute’s researchers had identified this issue and provided a route to change how the institute operated, for the betterment of all involved.
He said The Kids Institute took a businesslike approach to developing this strategy, setting longer-term goals, with key performance indicators at appropriate intervals.
It also wanted to enable the effective implementation of research without requiring the researchers to do all the heavy lifting after their results were proved.
Mr Carapetis cites the example of leading scientist Andrew Whitehouse, who has driven his autism research to a program being implemented by the National Disability Insurance Agency.
“He’s a great example of how you can do it, but I wouldn’t say the institute took responsibility for making that happen,” Mr Carapetis told Business News.
“That was because he’s Andrew Whitehouse.
“We are quite conscious that we’ve got a lot of things out [of] this place that probably, if we’d really focused on them, could get them out there into the hands of people much sooner.
“So we’re going to create a whole impact unit, which is about bringing expertise centrally to understanding how we can get information and research outcomes.
“We’ve never been afraid to try new things.
“We think this is a new blueprint for a research institute.”
The institute aims to shift towards collaborative, impact-driven research, highly focused on five key themes: early childhood development; mental health; infectious diseases; chronic diseases (including cancer, diabetes, and respiratory diseases); and the emerging field of precision health.
All of that would continue with the Indigenous overlay the institute has long been known for.
The impact unit referenced by Mr Carpentis would work to ensure research outcomes reached those who needed them, and to attract more significant funding, rather than leaving this in the hands of the researchers themselves.
It also wants to establish a sustainable culture, where researchers can thrive and succeed, including where funding is more secure.
“I think you’d be pushed to find a single medical research institute in the country that’s not posting deficits currently,” Mr Carapetis said.
“We think we’re one of the few institutes that’s got a plan to solve that.”
He said a test case for the new strategy emerged from the institute’s long-running cancer centre after a review found it was not making the most of having a strategic, collaborative approach to its otherwise top scientific work.
“I really challenged the cancer scientists, together with the clinicians, to come up with a bigger plan,” Mr Carapetis said.
“Together, they came up with a magnificent ten-year vision for a comprehensive kids cancer centre here in WA, which is really a seamless integration between the clinical care and the research.”
The strategy determined two areas of priority: what can the new centre do better for children who already have cancer, and then what about the kids with the disease in the future?
In the first instance, that has meant better access to clinical trials, so kids with rare cancers don’t have to go interstate to access the latest treatments.
In addition, Mr Carapetis said the centre’s strategy identified that Aboriginal kids with cancer had poorer outcomes than children in the general community.
It also found that cancer treatment was good at keeping children alive but was conducted in isolation from other factors in kids’ lives.
“We’re pretty good at making kids survive, but they’re left with so much damage from their treatments that we don’t take a holistic view of ... their survival, the quality of life, their education and so on,” Mr Carapetis said.
In terms of future therapies, the cancer scientists identified three areas where they could focus their strengths: new combinations of therapies; immunotherapy to kids who have solid tumours; and a world-first animal model of paediatric cancer (because children’s cancers are different to adult varieties but all the scientific models have been developed on mature animals).
Mr Carapetis said this strategy, which includes Perth Children’s Hospital, PCH Foundation and The University of Western Australia, ultimately won over the Perron Foundation to make such a significant contribution.
“[Stan Perron Charitable Foundation executive chair] Elizabeth Perron said to me ‘It sounds like you’ve been sitting around our board table for precisely what the donors are looking for’,” he said.
“So, that’s the example I think we can do across this institute.
“In each of those themes we can identify another version of that, which might be around early child development, it might be around mental health.
“It might be around the next vaccines. That’s what I mean by big, challenge-driven science.”
