I am, by nature, a worrier. I worry about small things, like whether I have forgotten my keys, when I know for a fact that I have double-checked to make sure they were packed, or whether my shoes clash with my outfit. I worry about things that don’t matter in the grand scheme of things.
But sometimes, my worries are bigger in scope. Sometimes I worry about things that we should all be worried about. Like, the ever-rising rates of mental health in this country. Like the My Health Record, and the implications of that on young people who do not want their health issues, which are sometimes deeply personal, revealed. The fact that so many of my friends still think going to see a counsellor is something of a last resort. That so many of the people around me, myself included, aren’t well-informed about health services, and aren’t sure how to best access them.
These are all valid concerns. Concerns that aren’t getting as much airtime as they should be, that have fallen to the back of a health sector that prioritises both infant and aged care above adolescent health.
I hope they can champion change in adolescent health and help empower other stakeholders in this area to do the same.
Or at least, this used to be true. Now, hopefully, with the advent of the Centre of Research Excellence in Adolescent Health (Wellbeing Health & Youth), this will change. This National Health and Medical Research Council funded initiative should see the dawn of a newfound focus and emphasis placed on adolescent health, in all areas, including policy. I hope that the Centre of Research Excellence is able to communicate the costs of ignoring adolescent health, and moreover, find ways to improve our approach to this criminally underfunded and under-researched area of health. I hope they can champion change in adolescent health and help empower other stakeholders in this area to do the same. I hope their trajectory is nationwide, and that they will engage the entire Australian health community in a dialogue, to conceive the future of healthcare that all Australian adolescents deserve.
I hope they are able to reconfigure what research means, and what young people’s role in this research is.
But, despite how lofty these goals may seem, I also have other hopes for this initiative. In particular, I hope they are able to reconfigure what research means, and what young people’s role in this research is. Research in the 21st century needs to evolve. This means more accessibility, more direct engagement, and more consideration for what community members want – in this case of course I am referring to young people. This may seem a radical idea, but from my perspective, there is no-one that can understand the needs of young people better than a young person. It therefore follows that researchers should try their utmost to harness this wealth of primary data, to allow their research to be as relevant and targeted as it can be.
However, there is a caveat. As a young person, there are particular ways in which I would like this engagement to play out. I believe that currently the relationship between young people and researchers is one-sided, in so far as there is a lot of consideration placed upon what the young person can do for the researcher and how they can improve their work, and not a lot of consideration is afforded to the converse, as to how research can enrich the lives of young people. To me this seems a rather limiting way to engage young people.
Research can be carried out in a way that is empowering for young people, that makes them feel like their voice is being heard and considered genuinely, rather than simply being used as a tokenistic gesture of ‘genuine’ research. And I think this kind of engagement in research is possible, and moreover, I think it is what young people deserve.
This is why we have come up with a framework for engaging young people in adolescent health research, with a Youth Engagement Declaration. This outlines exactly how young people would like to be involved in research, and how exactly researchers can ensure that all engagement is carried out in a fair, ethical way.
This declaration was generated through the direct input of young people, firstly at a youth workshop, which invited a diverse array of young people to generate guiding statements upon which to base the Youth Engagement Declaration. These statements were then further workshopped at a Roundtable, which included these young people as well as a myriad of academics, policy makers, researchers and professionals. The synergy and discussion in that room was electrifying, and from it emerged much food for thought, for the young people as well as professionals. From this arose the Youth Engagement Declaration, a manifesto of sorts, that is genuine and powerful in the way that it calls for researchers to do better and facilitate the engagement young people deserve.
This declaration is characterised by the phrase, “Nothing about us without us,” an overarching statement that emphasises the need and want that young people feel to be involved in the Centre.
Young people are complex, and one voice is not reflective of the entire teenage experience, a fact that should be reflected in research itself.
One of the main takeaways from this Youth Engagement Declaration was that a diverse range of young people needed to be represented in research. Young people are complex, and one voice is not reflective of the entire teenage experience, a fact that should be reflected in research itself.
Another common sentiment was that there needed to be acknowledgement for how valuable young people’s time is, and that this needed to be compensated accordingly, and that young people should be treated as equals, with their voices being amplified and visible to the same extent that adult voices are. These are principles that will springboard a new approach and inform the development of an Adolescent Health Research Commission – to co-create research which is more relevant, accessible and powerful than ever.
Adolescent health is important. Research into adolescent health is vital.
Young people have a voice, and it’s time to start listening to us.
It’s time adults and young people co-created more opportunities for collective voice and change – to shape together a future worth living for.
It’s time.
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Health: Have Your Say!
Are you aged between 12 and 17 years? Are you interested in voicing your opinions and experiences about health and research in the digital age? Young people from all over Australia are being invited to share their experiences and ideas via an online platform. The RErights platform has a series of activities, or “Missions”, to explore how you feel about health research, young people’s engagement and the role of technology.
Your contributions will be showcased at next year’s Australian Association for Adolescent Health (AAAH) Conference in Melbourne. There will be leading youth health researchers and advocates who will attend the conference. Young people from all over the country will come together and see your contributions.
Sharing your ideas will benefit us all by helping people to understand the diverse ways young people view health, research and technology.
Join Operation: Health here
Closing date: Friday 30th November 2018.
This project is facilitated by Western Sydney University’s Intergener8 Lab and part of Wellbeing Health & Youth.
