November 15, 2025 • 12 mins
A new report has revealed that young Australians are being left behind in medical research, creating gaps that could affect their health for decades to come.
Despite chronic diseases increasingly appearing in younger populations, most health studies focus on older adults, meaning treatments and policies often don't reflect what young people actually need.
Today, we're unpacking why this research gap exists, what it means for young Australians, and the initiatives trying to fix it.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Today's episode is brought to you by the Health Hive
in partnership with the University of Sydney, a project where
young Aussies can shape research that actually affects their lives,
from mental health to healthy eating. To learn how you
can contribute to public health research and advocacy that affects
your communities, you can take their free online course. Now
check out the Health Hive at Youthhealthhive dot com and
(00:20):
get involved already.
Speaker 2 (00:22):
And this is the Daily Art.
Speaker 3 (00:24):
This is the Daily ohs oh, now it makes sense.
Speaker 1 (00:35):
Good morning and welcome to the Daily OS. It's Sunday,
the sixteenth of November.
Speaker 3 (00:40):
I'm Emma Gillespie, I'm billyfit Simon's and it's a pleasure
to be in your ears on a special Sunday morning.
Speaker 1 (00:46):
Very exciting to be talking to you on a Sunday,
and we're here to tell you all about a new
report that has revealed that young Australians are being left
behind in medical research. It's a fascinating but concerning where
gaps are being created that could affect our health for
decades to come. Despite chronic diseases increasingly appearing in younger populations,
(01:10):
most health studies focus on older adults, meaning treatments and
policies often don't reflect what young people actually need. Today,
we are unpacking why this research gap exists, what it
means for young Australians, and the initiatives working to fix it.
And just before we dive into today's episode, a quick
note It is sponsored by the University of Sydney's Health Hive,
(01:32):
but the content in this episode has been produced using
our normal editorial processes.
Speaker 3 (01:40):
Am I always hear my friends talking about their experiences
with the healthcare system and the gaps that do exist there,
so I think this is a very relatable topic for
a lot of young Australians. Do you want to start
by just explaining what exactly a chronic disease is.
Speaker 1 (01:58):
Yeah, when you hear the term chronic diseases, we're talking
about long term health conditions, things that often require ongoing
medical attention, so type two diabetes for example, heart disease,
autoimmune disorders, mental health conditions. But what's concerning about chronic
diseases is we know that many of these conditions are
(02:20):
increasingly appearing in younger populations, so more young people reporting
more chronic disease. But because so much of the research
about these conditions has historically focused on older adults. It
means we don't have enough data about how these diseases
develop in young people. So there's this flow on result
that means not only are treatment options not catering to
(02:43):
younger Australians, but also prevention options. We are not able
to understand how to stop young people from developing some
of these conditions due to those gaps.
Speaker 3 (02:53):
That's so true that you don't often associate chronic conditions
with young people, but like I said, I do hear
people talk about it all the time.
Speaker 1 (03:02):
Exactly, and I think there has been a bit of
a changing national dialogue when it comes to openness and
transparency about these chronic diseases that affect so many Australians
but as well young people.
Speaker 3 (03:13):
Yeah, and so what we're saying here is that the
research hasn't quite coughed up with how many young people
are now experiencing chronic disease exactly.
Speaker 1 (03:23):
There were two major systematic reviews that I wanted to
talk about. They examined over one hundred and forty studies
across forty one countries involving more than thirty four thousand adolescents,
and those reviews found that youth engagement in prevention research
is rare, it's poorly evaluated, and it's seldom translated into policy.
Speaker 3 (03:45):
So the actual research tends to focus on older demographics
as opposed to really any young people. Yeah, exactly, And
can you give us an example of how this impacts
young people in real life?
Speaker 1 (03:58):
So if you have a disease, a chronic condition that
develops in early adulthood, it means that that might go undiagnosed, misdiagnosed, undetected,
and that can have a negative impact on prevention and
treatment options and outcomes for patients. You know, if you
are living with a chronic illness but you don't yet know,
(04:19):
not having treatment, not understanding, that could worsen your condition.
It could make life a lot harder, and it could
lead to a lot of unnecessary suffering. A really clear
example of this that I thought about is something like endometriosis.
So endo effects at least one in nine women. It
often begins in adolescence. But because there's been such a
(04:40):
lack of comprehensive research, so little was known about the condition,
that we had generations of women whose pain was just
dismissed as you know, bad periods. It's something we've heard
more and more about lately. But what this has all
led to our awareness gaps and data gaps that have
left patients waiting an average of seven to ten ten
years for a diagnosis. And it's only after these years
(05:04):
and years of sustained advocacy, increased dialogue, increased research funding,
national attention in recent years that ENDO has now become
part of the national conversation that's led to better diagnosis rates,
better treatment pathways, destigmatization. We've even had an inquiry into
women's pain led by the Victorian government, So you can
(05:26):
see there, how kind of when there is a groundswell
in a positive direction in the way there has been
for ENDO, that that can really improve outcomes.
Speaker 3 (05:35):
And so if we know that, if we know that
more research does lead to better outcomes, why hasn't there
been more research here when it comes to young people.
Speaker 1 (05:44):
There are a few reasons. One is that historically medical
research has always focused on the populations where diseases are
most visible. Now that tends to be older adults. Aging
populations tend to have more frequent and common incidents of disease, etc.
(06:05):
Another issue is that many disease risk factors might take
root during early adulthood, but researchers haven't always made the
connection that prevention needs to start with studying young people.
So think about patterns behaviors that you set in your
early adulthood that really can impact and determine your long
term health. Things like eating patterns, physical activity levels, stress management,
(06:30):
mental wellbeing, all of that can determine your health outcomes
decades later, but researchers haven't historically always paid attention to
their importance in younger years.
Speaker 3 (06:40):
And I think what's interesting is that this isn't just
about medical research being used to inform treatment options, but
it's also about prevention.
Speaker 1 (06:50):
Absolutely. Researchers say young people need access to systems that
are focused on prevention rather than exactly what you've said.
They're billy treatment. That means supportive environments, access to healthy
and affordable food, safe spaces to be active, and systems
that support their mental health. So creating those spaces will
(07:11):
lead to improved outcomes. But before we get there, there
needs to be this improved engagement. We need better engagement
between researchers and young people to understand what actually works
for them In a nutshell, experts are basically saying that
instead of waiting for young people to age into chronic disease,
that we should be focused on prevention and early intervention
(07:33):
right now.
Speaker 3 (07:34):
And so there are initiatives that are designed to do exactly.
Speaker 1 (07:38):
That exactly and one of the most interesting projects in
this space is called the Health Hive. It was launched
by researchers at the University of Sydney and it's designed
to empower young people to play meaningful roles in research
about their health. So really centering young people to have
a voice on the issues the health conversations that matter
(07:59):
to them. That includes sharing ideas, feedback, collaboration on independent projects.
The health Hive provides young people with the tools and
resources to have a say in the health conversations and
decisions impacting them, and that also includes a free online
course on youth public health research and advocacy. The project
(08:19):
began with something called the Health Advisory Panel for Youth
at the University of Sydney, which was established in twenty
twenty one. Now, over the course of a year, researchers
worked with a group of young people aged thirteen to
eighteen to guide adolescent health research. So I think it's
really fascinating this idea that the researchers who can close
(08:39):
the gaps are partnering with the young people who know
about the gaps and who have the kind of advocacy
and the language to help guide the policy.
Speaker 3 (08:49):
And so how does that actually work in practice?
Speaker 1 (08:52):
Well, the young people in these panels are working directly
with researchers, like I said, and that work can range
from helping to design surveys. So you know, if you
want to find out more about young people, why not
bring in the experts with the lived experience as young
people to help guide the right kinds of questions. They
(09:14):
might suggest better ways to communicate with young people. We
know that science and health communication can be a really
tricky space, and young people also work with researchers to
identify the research priorities that matter to them or even
co author research papers. The panel found growing evidence that
youth health outcomes could be improved through interventions that are
(09:35):
targeted and youth specific, for example, using youth relevant language,
technology and motivational cues. According to research published in BMC
Public Health. The team consulted more than five hundred young
Australians to understand how young people wanted to be engaged
in research, and the young advisors described brainstorming health issues
(09:57):
from their own experiences, helping develop and programs to support
healthy behaviors, and using scientific and public events to present
their findings.
Speaker 3 (10:06):
And what we're closing the gap look like for young people,
what would it actually mean.
Speaker 1 (10:11):
Hopefully there is a future where this gap is closed.
Billy and young people are helping to decide what gets studied,
how studies are designed, and that leads to research that
becomes more relevant to their actual lives. Better data, more
accurate diagnoses, faster treatment, health policies that reflect the needs
of younger generations, you know, rather than health policies that
(10:34):
are just kind of adapted from the status quo for
older populations. I think though, that the Endo example really
shows us what is possible here when you close research gaps,
when you build a more representative system, you're benefiting patients
at every life stage and you're improving outcomes across the board.
(10:54):
You know, a health system that sees young people and
responds to young people is a health system that's doing
the best and doing right by all Australians.
Speaker 3 (11:04):
A very important topic thank you for breaking that down pleasure,
and thank you so much for listening to this special
episode of The Daily os on a Sunday morning. We'll
be back tomorrow with our normal deep dives, but until then,
have a great rest of your weekend.
Speaker 2 (11:24):
My name is Lily Maddon and I'm a proud Arunda
Bungelung Caalcultin woman from Gadigol Country. The Daily oz acknowledges
that this podcast is recorded on the lands of the
Gadighl people and pays respect to all Aboriginal and Torres
Strait Island and nations. We pay our respects to the
first peoples of these countries, both past and present.
Speaker 1 (11:46):
The health Hive, in partnership with the University of Sydney,
is a free platform where young ossies are provided the
skills to shape research that affects their lives, from mental
health to healthy eating. Learners are connected to opportunities to
share ideas, give feedback, or even help lead projects. It's
all about making sure young voices aren't just included, they're
driving the conversation. Head to the Healthive website or follow
(12:09):
their Instagram to get involved and start making a difference today.
Today's episode is brought to you by the Health Hive
in partnership with the University of Sydney, a project where
young Aussies can shape research that actually affects their lives,
from mental health to healthy eating. To learn how you
can contribute to public health research and advocacy that affects
your communities, you can take their free online course. Now
check out the Health Hive at Youthhealthhive dot com and
(00:20):
get involved already.
Speaker 2 (00:22):
And this is the Daily Art.
Speaker 3 (00:24):
This is the Daily ohs oh, now it makes sense.
Speaker 1 (00:35):
Good morning and welcome to the Daily OS. It's Sunday,
the sixteenth of November.
Speaker 3 (00:40):
I'm Emma Gillespie, I'm billyfit Simon's and it's a pleasure
to be in your ears on a special Sunday morning.
Speaker 1 (00:46):
Very exciting to be talking to you on a Sunday,
and we're here to tell you all about a new
report that has revealed that young Australians are being left
behind in medical research. It's a fascinating but concerning where
gaps are being created that could affect our health for
decades to come. Despite chronic diseases increasingly appearing in younger populations,
(01:10):
most health studies focus on older adults, meaning treatments and
policies often don't reflect what young people actually need. Today,
we are unpacking why this research gap exists, what it
means for young Australians, and the initiatives working to fix it.
And just before we dive into today's episode, a quick
note It is sponsored by the University of Sydney's Health Hive,
(01:32):
but the content in this episode has been produced using
our normal editorial processes.
Speaker 3 (01:40):
Am I always hear my friends talking about their experiences
with the healthcare system and the gaps that do exist there,
so I think this is a very relatable topic for
a lot of young Australians. Do you want to start
by just explaining what exactly a chronic disease is.
Speaker 1 (01:58):
Yeah, when you hear the term chronic diseases, we're talking
about long term health conditions, things that often require ongoing
medical attention, so type two diabetes for example, heart disease,
autoimmune disorders, mental health conditions. But what's concerning about chronic
diseases is we know that many of these conditions are
(02:20):
increasingly appearing in younger populations, so more young people reporting
more chronic disease. But because so much of the research
about these conditions has historically focused on older adults. It
means we don't have enough data about how these diseases
develop in young people. So there's this flow on result
that means not only are treatment options not catering to
(02:43):
younger Australians, but also prevention options. We are not able
to understand how to stop young people from developing some
of these conditions due to those gaps.
Speaker 3 (02:53):
That's so true that you don't often associate chronic conditions
with young people, but like I said, I do hear
people talk about it all the time.
Speaker 1 (03:02):
Exactly, and I think there has been a bit of
a changing national dialogue when it comes to openness and
transparency about these chronic diseases that affect so many Australians
but as well young people.
Speaker 3 (03:13):
Yeah, and so what we're saying here is that the
research hasn't quite coughed up with how many young people
are now experiencing chronic disease exactly.
Speaker 1 (03:23):
There were two major systematic reviews that I wanted to
talk about. They examined over one hundred and forty studies
across forty one countries involving more than thirty four thousand adolescents,
and those reviews found that youth engagement in prevention research
is rare, it's poorly evaluated, and it's seldom translated into policy.
Speaker 3 (03:45):
So the actual research tends to focus on older demographics
as opposed to really any young people. Yeah, exactly, And
can you give us an example of how this impacts
young people in real life?
Speaker 1 (03:58):
So if you have a disease, a chronic condition that
develops in early adulthood, it means that that might go undiagnosed, misdiagnosed, undetected,
and that can have a negative impact on prevention and
treatment options and outcomes for patients. You know, if you
are living with a chronic illness but you don't yet know,
(04:19):
not having treatment, not understanding, that could worsen your condition.
It could make life a lot harder, and it could
lead to a lot of unnecessary suffering. A really clear
example of this that I thought about is something like endometriosis.
So endo effects at least one in nine women. It
often begins in adolescence. But because there's been such a
(04:40):
lack of comprehensive research, so little was known about the condition,
that we had generations of women whose pain was just
dismissed as you know, bad periods. It's something we've heard
more and more about lately. But what this has all
led to our awareness gaps and data gaps that have
left patients waiting an average of seven to ten ten
years for a diagnosis. And it's only after these years
(05:04):
and years of sustained advocacy, increased dialogue, increased research funding,
national attention in recent years that ENDO has now become
part of the national conversation that's led to better diagnosis rates,
better treatment pathways, destigmatization. We've even had an inquiry into
women's pain led by the Victorian government, So you can
(05:26):
see there, how kind of when there is a groundswell
in a positive direction in the way there has been
for ENDO, that that can really improve outcomes.
Speaker 3 (05:35):
And so if we know that, if we know that
more research does lead to better outcomes, why hasn't there
been more research here when it comes to young people.
Speaker 1 (05:44):
There are a few reasons. One is that historically medical
research has always focused on the populations where diseases are
most visible. Now that tends to be older adults. Aging
populations tend to have more frequent and common incidents of disease, etc.
(06:05):
Another issue is that many disease risk factors might take
root during early adulthood, but researchers haven't always made the
connection that prevention needs to start with studying young people.
So think about patterns behaviors that you set in your
early adulthood that really can impact and determine your long
term health. Things like eating patterns, physical activity levels, stress management,
(06:30):
mental wellbeing, all of that can determine your health outcomes
decades later, but researchers haven't historically always paid attention to
their importance in younger years.
Speaker 3 (06:40):
And I think what's interesting is that this isn't just
about medical research being used to inform treatment options, but
it's also about prevention.
Speaker 1 (06:50):
Absolutely. Researchers say young people need access to systems that
are focused on prevention rather than exactly what you've said.
They're billy treatment. That means supportive environments, access to healthy
and affordable food, safe spaces to be active, and systems
that support their mental health. So creating those spaces will
(07:11):
lead to improved outcomes. But before we get there, there
needs to be this improved engagement. We need better engagement
between researchers and young people to understand what actually works
for them In a nutshell, experts are basically saying that
instead of waiting for young people to age into chronic disease,
that we should be focused on prevention and early intervention
(07:33):
right now.
Speaker 3 (07:34):
And so there are initiatives that are designed to do exactly.
Speaker 1 (07:38):
That exactly and one of the most interesting projects in
this space is called the Health Hive. It was launched
by researchers at the University of Sydney and it's designed
to empower young people to play meaningful roles in research
about their health. So really centering young people to have
a voice on the issues the health conversations that matter
(07:59):
to them. That includes sharing ideas, feedback, collaboration on independent projects.
The health Hive provides young people with the tools and
resources to have a say in the health conversations and
decisions impacting them, and that also includes a free online
course on youth public health research and advocacy. The project
(08:19):
began with something called the Health Advisory Panel for Youth
at the University of Sydney, which was established in twenty
twenty one. Now, over the course of a year, researchers
worked with a group of young people aged thirteen to
eighteen to guide adolescent health research. So I think it's
really fascinating this idea that the researchers who can close
(08:39):
the gaps are partnering with the young people who know
about the gaps and who have the kind of advocacy
and the language to help guide the policy.
Speaker 3 (08:49):
And so how does that actually work in practice?
Speaker 1 (08:52):
Well, the young people in these panels are working directly
with researchers, like I said, and that work can range
from helping to design surveys. So you know, if you
want to find out more about young people, why not
bring in the experts with the lived experience as young
people to help guide the right kinds of questions. They
(09:14):
might suggest better ways to communicate with young people. We
know that science and health communication can be a really
tricky space, and young people also work with researchers to
identify the research priorities that matter to them or even
co author research papers. The panel found growing evidence that
youth health outcomes could be improved through interventions that are
(09:35):
targeted and youth specific, for example, using youth relevant language,
technology and motivational cues. According to research published in BMC
Public Health. The team consulted more than five hundred young
Australians to understand how young people wanted to be engaged
in research, and the young advisors described brainstorming health issues
(09:57):
from their own experiences, helping develop and programs to support
healthy behaviors, and using scientific and public events to present
their findings.
Speaker 3 (10:06):
And what we're closing the gap look like for young people,
what would it actually mean.
Speaker 1 (10:11):
Hopefully there is a future where this gap is closed.
Billy and young people are helping to decide what gets studied,
how studies are designed, and that leads to research that
becomes more relevant to their actual lives. Better data, more
accurate diagnoses, faster treatment, health policies that reflect the needs
of younger generations, you know, rather than health policies that
(10:34):
are just kind of adapted from the status quo for
older populations. I think though, that the Endo example really
shows us what is possible here when you close research gaps,
when you build a more representative system, you're benefiting patients
at every life stage and you're improving outcomes across the board.
(10:54):
You know, a health system that sees young people and
responds to young people is a health system that's doing
the best and doing right by all Australians.
Speaker 3 (11:04):
A very important topic thank you for breaking that down pleasure,
and thank you so much for listening to this special
episode of The Daily os on a Sunday morning. We'll
be back tomorrow with our normal deep dives, but until then,
have a great rest of your weekend.
Speaker 2 (11:24):
My name is Lily Maddon and I'm a proud Arunda
Bungelung Caalcultin woman from Gadigol Country. The Daily oz acknowledges
that this podcast is recorded on the lands of the
Gadighl people and pays respect to all Aboriginal and Torres
Strait Island and nations. We pay our respects to the
first peoples of these countries, both past and present.
Speaker 1 (11:46):
The health Hive, in partnership with the University of Sydney,
is a free platform where young ossies are provided the
skills to shape research that affects their lives, from mental
health to healthy eating. Learners are connected to opportunities to
share ideas, give feedback, or even help lead projects. It's
all about making sure young voices aren't just included, they're
driving the conversation. Head to the Healthive website or follow
(12:09):
their Instagram to get involved and start making a difference today.
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