1 00:00:00,200 --> 00:00:02,840 Speaker 1: Today's episode is brought to you by the Health Hive 2 00:00:03,000 --> 00:00:05,720 Speaker 1: in partnership with the University of Sydney, a project where 3 00:00:05,760 --> 00:00:08,880 Speaker 1: young Aussies can shape research that actually affects their lives, 4 00:00:08,960 --> 00:00:11,559 Speaker 1: from mental health to healthy eating. To learn how you 5 00:00:11,600 --> 00:00:14,400 Speaker 1: can contribute to public health research and advocacy that affects 6 00:00:14,440 --> 00:00:17,479 Speaker 1: your communities, you can take their free online course. Now 7 00:00:17,680 --> 00:00:20,239 Speaker 1: check out the Health Hive at Youthhealthhive dot com and 8 00:00:20,280 --> 00:00:22,079 Speaker 1: get involved already. 9 00:00:22,160 --> 00:00:24,439 Speaker 2: And this is the Daily Art. 10 00:00:24,560 --> 00:00:28,000 Speaker 3: This is the Daily ohs oh, now it makes sense. 11 00:00:35,880 --> 00:00:38,960 Speaker 1: Good morning and welcome to the Daily OS. It's Sunday, 12 00:00:39,000 --> 00:00:40,520 Speaker 1: the sixteenth of November. 13 00:00:40,640 --> 00:00:43,879 Speaker 3: I'm Emma Gillespie, I'm billyfit Simon's and it's a pleasure 14 00:00:43,880 --> 00:00:46,040 Speaker 3: to be in your ears on a special Sunday morning. 15 00:00:46,360 --> 00:00:49,000 Speaker 1: Very exciting to be talking to you on a Sunday, 16 00:00:49,200 --> 00:00:51,600 Speaker 1: and we're here to tell you all about a new 17 00:00:51,840 --> 00:00:55,280 Speaker 1: report that has revealed that young Australians are being left 18 00:00:55,360 --> 00:01:01,000 Speaker 1: behind in medical research. It's a fascinating but concerning where 19 00:01:01,040 --> 00:01:04,520 Speaker 1: gaps are being created that could affect our health for 20 00:01:04,640 --> 00:01:09,880 Speaker 1: decades to come. Despite chronic diseases increasingly appearing in younger populations, 21 00:01:10,200 --> 00:01:14,200 Speaker 1: most health studies focus on older adults, meaning treatments and 22 00:01:14,240 --> 00:01:18,720 Speaker 1: policies often don't reflect what young people actually need. Today, 23 00:01:18,920 --> 00:01:22,320 Speaker 1: we are unpacking why this research gap exists, what it 24 00:01:22,360 --> 00:01:25,720 Speaker 1: means for young Australians, and the initiatives working to fix it. 25 00:01:26,040 --> 00:01:28,960 Speaker 1: And just before we dive into today's episode, a quick 26 00:01:29,000 --> 00:01:32,560 Speaker 1: note It is sponsored by the University of Sydney's Health Hive, 27 00:01:32,720 --> 00:01:35,280 Speaker 1: but the content in this episode has been produced using 28 00:01:35,400 --> 00:01:37,280 Speaker 1: our normal editorial processes. 29 00:01:40,800 --> 00:01:44,560 Speaker 3: Am I always hear my friends talking about their experiences 30 00:01:44,600 --> 00:01:48,120 Speaker 3: with the healthcare system and the gaps that do exist there, 31 00:01:48,600 --> 00:01:51,160 Speaker 3: so I think this is a very relatable topic for 32 00:01:51,280 --> 00:01:54,000 Speaker 3: a lot of young Australians. Do you want to start 33 00:01:54,080 --> 00:01:57,600 Speaker 3: by just explaining what exactly a chronic disease is. 34 00:01:58,200 --> 00:02:01,520 Speaker 1: Yeah, when you hear the term chronic diseases, we're talking 35 00:02:01,560 --> 00:02:06,880 Speaker 1: about long term health conditions, things that often require ongoing 36 00:02:07,040 --> 00:02:11,560 Speaker 1: medical attention, so type two diabetes for example, heart disease, 37 00:02:11,680 --> 00:02:16,680 Speaker 1: autoimmune disorders, mental health conditions. But what's concerning about chronic 38 00:02:16,720 --> 00:02:20,520 Speaker 1: diseases is we know that many of these conditions are 39 00:02:20,639 --> 00:02:25,480 Speaker 1: increasingly appearing in younger populations, so more young people reporting 40 00:02:25,639 --> 00:02:29,200 Speaker 1: more chronic disease. But because so much of the research 41 00:02:29,320 --> 00:02:33,520 Speaker 1: about these conditions has historically focused on older adults. It 42 00:02:33,600 --> 00:02:36,800 Speaker 1: means we don't have enough data about how these diseases 43 00:02:36,960 --> 00:02:40,160 Speaker 1: develop in young people. So there's this flow on result 44 00:02:40,240 --> 00:02:43,320 Speaker 1: that means not only are treatment options not catering to 45 00:02:43,400 --> 00:02:47,520 Speaker 1: younger Australians, but also prevention options. We are not able 46 00:02:47,560 --> 00:02:50,800 Speaker 1: to understand how to stop young people from developing some 47 00:02:50,840 --> 00:02:52,919 Speaker 1: of these conditions due to those gaps. 48 00:02:53,240 --> 00:02:57,240 Speaker 3: That's so true that you don't often associate chronic conditions 49 00:02:57,360 --> 00:02:59,919 Speaker 3: with young people, but like I said, I do hear 50 00:03:00,000 --> 00:03:01,919 Speaker 3: people talk about it all the time. 51 00:03:02,160 --> 00:03:04,200 Speaker 1: Exactly, and I think there has been a bit of 52 00:03:04,240 --> 00:03:07,160 Speaker 1: a changing national dialogue when it comes to openness and 53 00:03:07,200 --> 00:03:11,280 Speaker 1: transparency about these chronic diseases that affect so many Australians 54 00:03:11,440 --> 00:03:13,080 Speaker 1: but as well young people. 55 00:03:13,240 --> 00:03:15,560 Speaker 3: Yeah, and so what we're saying here is that the 56 00:03:15,720 --> 00:03:20,079 Speaker 3: research hasn't quite coughed up with how many young people 57 00:03:20,120 --> 00:03:23,239 Speaker 3: are now experiencing chronic disease exactly. 58 00:03:23,639 --> 00:03:27,280 Speaker 1: There were two major systematic reviews that I wanted to 59 00:03:27,280 --> 00:03:30,680 Speaker 1: talk about. They examined over one hundred and forty studies 60 00:03:30,720 --> 00:03:35,560 Speaker 1: across forty one countries involving more than thirty four thousand adolescents, 61 00:03:36,000 --> 00:03:39,840 Speaker 1: and those reviews found that youth engagement in prevention research 62 00:03:40,160 --> 00:03:45,360 Speaker 1: is rare, it's poorly evaluated, and it's seldom translated into policy. 63 00:03:45,560 --> 00:03:49,240 Speaker 3: So the actual research tends to focus on older demographics 64 00:03:49,320 --> 00:03:52,840 Speaker 3: as opposed to really any young people. Yeah, exactly, And 65 00:03:53,080 --> 00:03:56,080 Speaker 3: can you give us an example of how this impacts 66 00:03:56,440 --> 00:03:58,520 Speaker 3: young people in real life? 67 00:03:58,920 --> 00:04:02,680 Speaker 1: So if you have a disease, a chronic condition that 68 00:04:02,800 --> 00:04:10,080 Speaker 1: develops in early adulthood, it means that that might go undiagnosed, misdiagnosed, undetected, 69 00:04:10,560 --> 00:04:13,400 Speaker 1: and that can have a negative impact on prevention and 70 00:04:13,440 --> 00:04:16,120 Speaker 1: treatment options and outcomes for patients. You know, if you 71 00:04:16,160 --> 00:04:19,080 Speaker 1: are living with a chronic illness but you don't yet know, 72 00:04:19,880 --> 00:04:23,880 Speaker 1: not having treatment, not understanding, that could worsen your condition. 73 00:04:24,040 --> 00:04:26,280 Speaker 1: It could make life a lot harder, and it could 74 00:04:26,400 --> 00:04:29,559 Speaker 1: lead to a lot of unnecessary suffering. A really clear 75 00:04:29,680 --> 00:04:34,080 Speaker 1: example of this that I thought about is something like endometriosis. 76 00:04:34,279 --> 00:04:37,360 Speaker 1: So endo effects at least one in nine women. It 77 00:04:37,440 --> 00:04:40,839 Speaker 1: often begins in adolescence. But because there's been such a 78 00:04:40,960 --> 00:04:44,840 Speaker 1: lack of comprehensive research, so little was known about the condition, 79 00:04:45,040 --> 00:04:48,919 Speaker 1: that we had generations of women whose pain was just 80 00:04:48,960 --> 00:04:52,280 Speaker 1: dismissed as you know, bad periods. It's something we've heard 81 00:04:52,320 --> 00:04:54,760 Speaker 1: more and more about lately. But what this has all 82 00:04:54,839 --> 00:04:57,359 Speaker 1: led to our awareness gaps and data gaps that have 83 00:04:57,440 --> 00:05:00,279 Speaker 1: left patients waiting an average of seven to ten ten 84 00:05:00,560 --> 00:05:04,240 Speaker 1: years for a diagnosis. And it's only after these years 85 00:05:04,240 --> 00:05:09,120 Speaker 1: and years of sustained advocacy, increased dialogue, increased research funding, 86 00:05:09,320 --> 00:05:13,479 Speaker 1: national attention in recent years that ENDO has now become 87 00:05:13,560 --> 00:05:17,599 Speaker 1: part of the national conversation that's led to better diagnosis rates, 88 00:05:17,680 --> 00:05:22,920 Speaker 1: better treatment pathways, destigmatization. We've even had an inquiry into 89 00:05:22,960 --> 00:05:26,080 Speaker 1: women's pain led by the Victorian government, So you can 90 00:05:26,120 --> 00:05:28,760 Speaker 1: see there, how kind of when there is a groundswell 91 00:05:28,920 --> 00:05:31,520 Speaker 1: in a positive direction in the way there has been 92 00:05:31,520 --> 00:05:34,800 Speaker 1: for ENDO, that that can really improve outcomes. 93 00:05:35,120 --> 00:05:36,880 Speaker 3: And so if we know that, if we know that 94 00:05:37,160 --> 00:05:41,520 Speaker 3: more research does lead to better outcomes, why hasn't there 95 00:05:41,600 --> 00:05:44,400 Speaker 3: been more research here when it comes to young people. 96 00:05:44,839 --> 00:05:50,040 Speaker 1: There are a few reasons. One is that historically medical 97 00:05:50,080 --> 00:05:54,640 Speaker 1: research has always focused on the populations where diseases are 98 00:05:54,680 --> 00:05:59,080 Speaker 1: most visible. Now that tends to be older adults. Aging 99 00:05:59,120 --> 00:06:04,599 Speaker 1: populations tend to have more frequent and common incidents of disease, etc. 100 00:06:05,560 --> 00:06:09,560 Speaker 1: Another issue is that many disease risk factors might take 101 00:06:09,720 --> 00:06:13,680 Speaker 1: root during early adulthood, but researchers haven't always made the 102 00:06:13,760 --> 00:06:17,240 Speaker 1: connection that prevention needs to start with studying young people. 103 00:06:17,680 --> 00:06:21,640 Speaker 1: So think about patterns behaviors that you set in your 104 00:06:22,000 --> 00:06:25,320 Speaker 1: early adulthood that really can impact and determine your long 105 00:06:25,440 --> 00:06:29,799 Speaker 1: term health. Things like eating patterns, physical activity levels, stress management, 106 00:06:30,360 --> 00:06:33,720 Speaker 1: mental wellbeing, all of that can determine your health outcomes 107 00:06:33,839 --> 00:06:38,400 Speaker 1: decades later, but researchers haven't historically always paid attention to 108 00:06:38,680 --> 00:06:40,600 Speaker 1: their importance in younger years. 109 00:06:40,880 --> 00:06:43,599 Speaker 3: And I think what's interesting is that this isn't just 110 00:06:43,640 --> 00:06:48,360 Speaker 3: about medical research being used to inform treatment options, but 111 00:06:48,400 --> 00:06:50,240 Speaker 3: it's also about prevention. 112 00:06:50,600 --> 00:06:54,400 Speaker 1: Absolutely. Researchers say young people need access to systems that 113 00:06:54,480 --> 00:06:57,839 Speaker 1: are focused on prevention rather than exactly what you've said. 114 00:06:57,839 --> 00:07:02,440 Speaker 1: They're billy treatment. That means supportive environments, access to healthy 115 00:07:02,440 --> 00:07:06,680 Speaker 1: and affordable food, safe spaces to be active, and systems 116 00:07:07,000 --> 00:07:11,680 Speaker 1: that support their mental health. So creating those spaces will 117 00:07:11,760 --> 00:07:15,200 Speaker 1: lead to improved outcomes. But before we get there, there 118 00:07:15,280 --> 00:07:18,920 Speaker 1: needs to be this improved engagement. We need better engagement 119 00:07:18,960 --> 00:07:22,600 Speaker 1: between researchers and young people to understand what actually works 120 00:07:22,600 --> 00:07:25,800 Speaker 1: for them In a nutshell, experts are basically saying that 121 00:07:25,960 --> 00:07:29,520 Speaker 1: instead of waiting for young people to age into chronic disease, 122 00:07:29,640 --> 00:07:33,200 Speaker 1: that we should be focused on prevention and early intervention 123 00:07:33,920 --> 00:07:34,440 Speaker 1: right now. 124 00:07:34,720 --> 00:07:38,720 Speaker 3: And so there are initiatives that are designed to do exactly. 125 00:07:38,320 --> 00:07:41,680 Speaker 1: That exactly and one of the most interesting projects in 126 00:07:41,680 --> 00:07:44,440 Speaker 1: this space is called the Health Hive. It was launched 127 00:07:44,440 --> 00:07:47,920 Speaker 1: by researchers at the University of Sydney and it's designed 128 00:07:47,960 --> 00:07:51,560 Speaker 1: to empower young people to play meaningful roles in research 129 00:07:51,720 --> 00:07:55,040 Speaker 1: about their health. So really centering young people to have 130 00:07:55,120 --> 00:07:59,080 Speaker 1: a voice on the issues the health conversations that matter 131 00:07:59,160 --> 00:08:05,040 Speaker 1: to them. That includes sharing ideas, feedback, collaboration on independent projects. 132 00:08:05,400 --> 00:08:08,160 Speaker 1: The health Hive provides young people with the tools and 133 00:08:08,240 --> 00:08:11,240 Speaker 1: resources to have a say in the health conversations and 134 00:08:11,320 --> 00:08:15,200 Speaker 1: decisions impacting them, and that also includes a free online 135 00:08:15,320 --> 00:08:19,480 Speaker 1: course on youth public health research and advocacy. The project 136 00:08:19,560 --> 00:08:22,200 Speaker 1: began with something called the Health Advisory Panel for Youth 137 00:08:22,280 --> 00:08:26,000 Speaker 1: at the University of Sydney, which was established in twenty 138 00:08:26,120 --> 00:08:28,960 Speaker 1: twenty one. Now, over the course of a year, researchers 139 00:08:29,000 --> 00:08:31,840 Speaker 1: worked with a group of young people aged thirteen to 140 00:08:32,000 --> 00:08:35,559 Speaker 1: eighteen to guide adolescent health research. So I think it's 141 00:08:35,640 --> 00:08:39,559 Speaker 1: really fascinating this idea that the researchers who can close 142 00:08:39,600 --> 00:08:43,040 Speaker 1: the gaps are partnering with the young people who know 143 00:08:43,160 --> 00:08:45,760 Speaker 1: about the gaps and who have the kind of advocacy 144 00:08:45,800 --> 00:08:48,760 Speaker 1: and the language to help guide the policy. 145 00:08:49,800 --> 00:08:52,800 Speaker 3: And so how does that actually work in practice? 146 00:08:52,960 --> 00:08:56,480 Speaker 1: Well, the young people in these panels are working directly 147 00:08:56,800 --> 00:09:01,520 Speaker 1: with researchers, like I said, and that work can range 148 00:09:01,559 --> 00:09:05,000 Speaker 1: from helping to design surveys. So you know, if you 149 00:09:05,120 --> 00:09:07,920 Speaker 1: want to find out more about young people, why not 150 00:09:08,080 --> 00:09:11,240 Speaker 1: bring in the experts with the lived experience as young 151 00:09:11,280 --> 00:09:14,439 Speaker 1: people to help guide the right kinds of questions. They 152 00:09:14,520 --> 00:09:17,800 Speaker 1: might suggest better ways to communicate with young people. We 153 00:09:17,920 --> 00:09:20,560 Speaker 1: know that science and health communication can be a really 154 00:09:20,559 --> 00:09:24,120 Speaker 1: tricky space, and young people also work with researchers to 155 00:09:24,280 --> 00:09:28,040 Speaker 1: identify the research priorities that matter to them or even 156 00:09:28,040 --> 00:09:32,360 Speaker 1: co author research papers. The panel found growing evidence that 157 00:09:32,400 --> 00:09:35,840 Speaker 1: youth health outcomes could be improved through interventions that are 158 00:09:35,880 --> 00:09:40,400 Speaker 1: targeted and youth specific, for example, using youth relevant language, 159 00:09:40,440 --> 00:09:45,160 Speaker 1: technology and motivational cues. According to research published in BMC 160 00:09:45,320 --> 00:09:48,880 Speaker 1: Public Health. The team consulted more than five hundred young 161 00:09:48,880 --> 00:09:53,160 Speaker 1: Australians to understand how young people wanted to be engaged 162 00:09:53,200 --> 00:09:57,200 Speaker 1: in research, and the young advisors described brainstorming health issues 163 00:09:57,240 --> 00:10:01,240 Speaker 1: from their own experiences, helping develop and programs to support 164 00:10:01,240 --> 00:10:05,120 Speaker 1: healthy behaviors, and using scientific and public events to present 165 00:10:05,160 --> 00:10:05,840 Speaker 1: their findings. 166 00:10:06,120 --> 00:10:09,880 Speaker 3: And what we're closing the gap look like for young people, 167 00:10:09,880 --> 00:10:11,000 Speaker 3: what would it actually mean. 168 00:10:11,559 --> 00:10:14,080 Speaker 1: Hopefully there is a future where this gap is closed. 169 00:10:14,120 --> 00:10:18,160 Speaker 1: Billy and young people are helping to decide what gets studied, 170 00:10:18,559 --> 00:10:21,800 Speaker 1: how studies are designed, and that leads to research that 171 00:10:21,840 --> 00:10:25,760 Speaker 1: becomes more relevant to their actual lives. Better data, more 172 00:10:25,800 --> 00:10:30,760 Speaker 1: accurate diagnoses, faster treatment, health policies that reflect the needs 173 00:10:30,880 --> 00:10:33,959 Speaker 1: of younger generations, you know, rather than health policies that 174 00:10:34,000 --> 00:10:37,000 Speaker 1: are just kind of adapted from the status quo for 175 00:10:37,080 --> 00:10:40,960 Speaker 1: older populations. I think though, that the Endo example really 176 00:10:41,000 --> 00:10:45,199 Speaker 1: shows us what is possible here when you close research gaps, 177 00:10:45,240 --> 00:10:49,720 Speaker 1: when you build a more representative system, you're benefiting patients 178 00:10:49,800 --> 00:10:54,200 Speaker 1: at every life stage and you're improving outcomes across the board. 179 00:10:54,280 --> 00:10:56,960 Speaker 1: You know, a health system that sees young people and 180 00:10:57,000 --> 00:11:00,320 Speaker 1: responds to young people is a health system that's doing 181 00:11:00,679 --> 00:11:03,560 Speaker 1: the best and doing right by all Australians. 182 00:11:04,440 --> 00:11:08,640 Speaker 3: A very important topic thank you for breaking that down pleasure, 183 00:11:08,960 --> 00:11:11,439 Speaker 3: and thank you so much for listening to this special 184 00:11:11,480 --> 00:11:14,679 Speaker 3: episode of The Daily os on a Sunday morning. We'll 185 00:11:14,679 --> 00:11:17,600 Speaker 3: be back tomorrow with our normal deep dives, but until then, 186 00:11:18,000 --> 00:11:22,839 Speaker 3: have a great rest of your weekend. 187 00:11:24,120 --> 00:11:26,440 Speaker 2: My name is Lily Maddon and I'm a proud Arunda 188 00:11:26,679 --> 00:11:31,480 Speaker 2: Bungelung Caalcultin woman from Gadigol Country. The Daily oz acknowledges 189 00:11:31,559 --> 00:11:33,719 Speaker 2: that this podcast is recorded on the lands of the 190 00:11:33,720 --> 00:11:37,280 Speaker 2: Gadighl people and pays respect to all Aboriginal and Torres 191 00:11:37,280 --> 00:11:40,240 Speaker 2: Strait Island and nations. We pay our respects to the 192 00:11:40,240 --> 00:11:42,960 Speaker 2: first peoples of these countries, both past and present. 193 00:11:46,160 --> 00:11:48,679 Speaker 1: The health Hive, in partnership with the University of Sydney, 194 00:11:48,720 --> 00:11:51,200 Speaker 1: is a free platform where young ossies are provided the 195 00:11:51,240 --> 00:11:54,840 Speaker 1: skills to shape research that affects their lives, from mental 196 00:11:54,880 --> 00:11:58,080 Speaker 1: health to healthy eating. Learners are connected to opportunities to 197 00:11:58,120 --> 00:12:02,040 Speaker 1: share ideas, give feedback, or even help lead projects. It's 198 00:12:02,080 --> 00:12:05,440 Speaker 1: all about making sure young voices aren't just included, they're 199 00:12:05,559 --> 00:12:08,959 Speaker 1: driving the conversation. Head to the Healthive website or follow 200 00:12:09,000 --> 00:12:15,280 Speaker 1: their Instagram to get involved and start making a difference today.