Elevating the voice of young people through research

Health Consumers NSW talked to Dr Stephanie Partridge – a Senior Research Fellow at the School of Health Sciences, Faculty of Medicine and Health at the University of Sydney, and one of the high school researchers involved in her project, Alexi Cross.

Alexi is part of HAPYUS (‘pronounced Happy Us’). The researchers designed HAPYUS as a leadership program for young people to get an insider’s look into how research is conducted, and as a Youth Advisory Group for Stephanie’s own research project – developing a digital health intervention for young people to support nutrition and physical activity.

Sixteen NSW high school students joined HAPYUS and went on to publish a research essay in Lancet Child and Adolescent Health. Their essay discusses the most serious health challenges young people are facing today which could contribute to future chronic disease

Stephanie, what led you to include young people in your research project and to set up a youth advisory panel and program?

Stephanie: All my research was focused on improving lifestyle behaviours among young people and, obviously, the best way to do that was to involve them

We found that there are studies involving young people in research but most of them don’t really make the young people part of the project. After an extensive literature review, we decided the best strategy for us was a youth advisory group. We wanted to ensure that we – as well as the young people involved – benefited from our partnership. So, we set it up as a 12-month program called HAPYUS.

Traditionally, you might consult young people via a survey, or a focus group and they come in, and then they’re not really connected to the research. But we wanted to change that dynamic. Our program allows them to develop research and leadership skills to, hopefully, improve their confidence and self-efficacy. They get to support research projects over a longer period. But of course, we are learning as we go.

How did you find the young people who ended up joining HAPYUS?

Stephanie: We just put out a call through our networks. We made some connections with high schools based around the University’s Westmead campus and made a few connections with schools in Western Sydney. I just contacted them directly. We also involved networks that we had in regional New South Wales. We did paid advertising on Instagram too and quite a few of the young people saw the ad and applied.

We had around 32 young people who applied and it was hard to say no to some because they were all so good.  But we only had funding for 16 participants in this pilot. We ensured that the group was gender diverse, 25% from regional New South Wales and that there was a bit of an age balance too – some younger and some older. We also looked at languages spoken at home and ensured some ethnic diversity.

What was in it for the successful applicants?

Stephanie: They got to participate in the program, increased their leadership skills, connected with the university, and understood and contributed to research. A lot of them were really driven and motivated by that. Ultimately, they published their own research paper in the Lancet. They also got paid for their work through gift cards.

Alexi, how did you hear about HAPYUS and what made you want to join?

Alexi: I can’t quite remember how. I think I saw it advertised on social media. I had been involved in a Health Literacy Advisory Council before and I really wanted to get involved with Stephanie’s project because of the nutritional and chronic disease aspects of the research. I’m very interested in finding the links between nutrition and chronic diseases. That was the immediate draw. I also just love working with other people and being part of something that is going to make something good happen.

This is a question for both of you, how did you first come together and how did the project evolve to lead to the research opinion essay in the Lancet?

Alexi: Because of the nature of our project, all of us young people came from very different experiences. And we weren’t all physically in the same place. As one online platform, we used Zoom.

I found it interesting because we were able to connect with people across New South Wales to get that different perspective. For example, I try to advocate for the rural aspect. Other students in our group had that inner city knowledge of different pressures and problems, which I’m not aware of. It’s good to have those different perspectives and it made our research and the published paper better.

Stephanie: With health consumer research, it’s always a bit of a chicken and egg thing with the funding. We already had the funding to do specific research because we had to write the application. At the same time, we were trying to get new, adolescent-led ideas and include these in the research too.

We gave our new, young research partners a brief overview of our research project. And then, instead of going into the actual project that’s funding them – which is to develop a digital health intervention for young people to support nutrition and physical activity – we just wanted to understand what the top issues for young people are.

So, the first few sessions were just spent understanding and discussing that. The three concepts for the published essay came from those discussions where everyone contributed.

We also found that people were quite shy at the beginning, which is fair enough. Not everyone is comfortable just voicing their own opinions on Zoom with strangers. When we moved to Slack (Editor’s Note: an online platform for teamwork and discussions), a lot of young people felt more comfortable contributing that way.

And how did that end up as a published article?

Stephanie: From that Zoom and Slack content, I asked the group to write a 200–300-word summary that we could just use to guide our group forward.  But instead, the students went off and wrote a 2000-word essay, which led to their article.  And that was really their published essay, not mine. But the essay also provides a great underlying foundation of what the key issues in the eyes of young people for future chronic diseases are – and what we can do about it. Which is what I need for my research.

Alexi, you said that you are trying to advocate for rural communities. Do you have any tips for researchers or health engagement staff who want to include young people’s perspectives from rural and remote NSW in their projects?

Alexi: I would never have known about this if I wasn’t even in the right networks. So, I think staff or researchers should reach directly out to schools and youth councils. That’s how I first found out about the projects I have been involved with. You will end up with 2-3 students who are passionate about what you do from a rural background. I really think the school level is where the best kind of engagement occurs, and you should include the teachers too as they can facilitate your contact with the students.

But I think social media is important too. Quite a lot of my friends in HAPYUS found out about it via socials. And the program needs to be set up online using a good online platform so it’s accessible for us outside the big cities. I would have loved to be at our actual in-person, face-to-face meeting in Sydney (Editor’s note: HAPYUS had some in-person opportunities in Sydney). It just was bad timing for me. But it would be good if that would be all paid too if we wanted to come to be there in person.

Stephanie, how did you support the young people to do this fantastic work? And Alexi, how did you feel best supported?

Alexi: I think the best support for me really was the enthusiasm that Stephanie and her team showed for our input and opinions. You could tell that they really wanted to listen to us, really wanted to hear from us. First meetings are always hard, but they got all of us involved. They also pushed us into different opportunities like writing the journal article and going on TV News shows, or me doing this interview right now and talking to people about what we did. I think, just giving us those opportunities, they made us feel very comfortable.

Stephanie: You should be mindful that you are working around young people’s schedules, which are different to a nine to five, or what we do in research. We did a lot of the work over the January school holidays so there was no school, but of course, the students wanted to do things with their friends and family. It’s their holidays and they’re volunteering their time. They were working for a lot more hours than I was paying them to write the article. Be respectful of that.

It was also a bit of an adjustment for me to make sure I regularly checked in and fostered that collaborative approach, writing a paper together. I was mindful of helping where I could, without putting my stamp on things. I think when you are at school, you are so used to handing your assignment in and getting marked on it. So, for the students it was that process of learning how to do collaborative work, where I’m not assessing what they’re doing – I’m just helping. You don’t have to send me a polished, perfect version. It was a bit of a learning curve for both, the researchers, and the students.

Alexi, Stephanie – what do you wish for the future of the HAPYUS program and youth involvement in projects like yours?

Stephanie: We’re hoping to get more funding to keep HAPYUS moving forward. People underestimate how much time a project like this takes and how much is going on behind the scenes.

They just see the essay and say ‘how great’. But the effort behind the scenes was huge to be able to get to that point. People don’t see the time investment that you need to develop those strong relationships with consumers.

I would love to get the infrastructure and funding in place to run it again with a different group of students – to give more young people the opportunity to join and get new voices and new ideas. I imagine that our current young people will become alumni and still be part of our online community where they can engage and be part of things.

But I urge any consumers to ask what’s in it for me. It must be bi-directional. If someone is asking you to volunteer, you’re passionate about that, and you’re wanting to give back to the community, so you don’t expect much back.

But, hopefully, there’s something in it for the people that are giving up their time too. Your time is valuable. So, I don’t mind writing letters of recommendation if our young people are going for a new job and ensuring some mentoring and leadership skills training for them.  It’s not a silly question to ask what you get out of being involved.

Alexi: We are just happy that our voices are heard and are having an impact. It is humbling to know that the work we did can impact someone. I think that’s awesome, and I would love to see the campaign outcomes of the digital intervention Stephanie is developing.  I would love to see more discussions about adolescent health like we started with our research paper.

Alexi, if you could talk to the Health Minister right now, what would be the two main points you would like to get across in regards to young people’s health in New South Wales?

Alexi: My first point would be about all the mis-messaging and misinformation that occurs in health. We need to have a system that ensures that information is as truthful as it can be. All this misinformation has such a flow-on effect: Body image, climate change, and stuff like that.

Secondly, put a real emphasis on prevention. I think now, most money is spent on treatment. Prevention has the most potential for impact.

And finally, what advice would you give a young person who is about to get involved in research or community representation in the health space?

Alexi: Don’t be afraid to put your voice forward. There’s no such thing as a stupid idea or a bad idea. Your perspective is as valid as anybody else’s. People do want to hear it.

I always found that just listening to other people sharing their stories gives you confidence if you’re a bit shy or anxious to speak up.  What I always did is, let someone else speak first, hear what they’re saying to test the room. And then I’m like, okay, I feel happy to speak now.

 

Thank you so much for your time and insights speaking to me today Alexi and Stephanie!

 

HCNSW’s Communications team member, Julia Brockhausen, interviewed Stephanie and Alexi via Zoom in August 2022.

 

More information about HAPYUS:

• Essay in the Lancet Child and Adolescent Health: 
• Article on the University of Sydney website
• Croakey Health Media article

 

How can Health Consumers NSW help with your health consumer engagement?

HCNSW can help you find health consumer representatives for your co-research, offers consumer engagement training for researchers and communities and can help you design your engagement: www.hcnsw.org.au.

Please email our Consumer Engagement Manager – Research, Carrie Hayter, at chayter@hcnsw.org.au to find out more.