The NextStep story: Young people, digital self-help and better mental health outcomes

Transcript

1. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) NADINE RAYDAN: Thanks for having me here, I am the opposite to Jonathan story, your face of already in crisis is something that (inaudible). I did the silly thing of putting the laptop at the back, but I will try to make sure it clicks along. You can log on, and have a look, at the NextStep website. It is in Feeder, I am pretty grateful to the organisation for letting me show the work. So, Reach Out is a great service, it is for schools and students. We provide mental health support, to young people. Most of our products, everything we do, is codesigned with young people. When a young person tells us, and a lot of the following quotes are from early codesign: "It is hard to find ways to get help, when it is hard to get out of bed." These tools help to provide support to get out of bed. It provides support for people who do not have full capacity... For me, it is depression, and it blocks my higher thinking, I don't have very good recall, I can't understand particularly difficult things, even though I should be able to", we know that these are not isolated incidents, these young people are not alone in what they are experiencing. This is what self-help looks like in the mental health field. This drives the work that we do, the desire for autonomy, barriers that prevent young people from seeking official help for their mental health issues. Just under one in four young people, 15 to 19, live with a mental illness, only 30% of them seek help, and once they do, they are already in heightened stress. In 2018, young people identified as being top three issues as personal concern - coping with stress, study issues, and mental health issues. Young people are stepping into the unknown when they are seeking help. They are well outside their comfort zone, they can be feeling scared, anxious, alone, and unsure who or what to trust. They are likely to be seeking help privately, on a personal device, and the help seeking process is often not linear. The journey has three key parts or stages. Assessing, accepting, accessing. Young people get very overwhelmed, they encounter barriers, they can get stuck and give up entirely, or come back after your two. They don't know where to start. Once they start, it is hard to discern what is trustworthy, credible, and as a result of this the University of Melbourne, and the young and well corporate Centre, have provided technology to help young people. It is designed to help 18 to 25-year-olds going through a tough time. It is to assist young people to get the next step in that mental health journey, and improve the next outcomes, it is online and free. The next thing developed through co-design, means that young people were involved in designing and evaluating the product. It is now a few years old. We have been able to address some of the key points, looking at the data, through the live product, out in the world for a couple of years. The vision for the next step, is a personalised approach to helping young people to understand their individual situation, and then extend the tools to help them take control of their mental health. It is somewhat conversation based. It is a bit like chatbox, but it is still bound by very safe parameters, driven by user input, it is a really complex space to designing.
2. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) Page 2 of 4 A young person can receive the support that they need at the time in the following steps - working out what is the problem, then a list of issues (recognising what is going on is the first step of getting better), then accepting the severity of the issue that they have chosen (letting the young person know what is affecting them), and then access step. Because it is digital, it is self-directed, we can provide multiple options for the next step. It is a departure from the traditional approach, which sees primary care as your local GP. The support options here are information and tools, peer support forums and online chat services. So, the existing product was tangled in multiple data sources, sorting what is relevant from what is useful, everything in this pile of stuff was useful and interesting. The algorithm was developed by clinicians, the product was developed through co-design, then we have the two years of data after when live. Several things about this expense was still not working for young people. It was launched over 50,000 times last year, but people were not progressing through the stages. It included things like data and integration, text back options, acquisition, conversion, retention,... But it is some of the more atypical problems and configurations that make it challenging. The impact of the problem was pretty straightforward. We also needed to understand better why young people were spending longer on each step. Step one, the symptom, it was obvious. We have not given them a way to bypass it. Step three is the severity of the issue, this was less obvious. We wanted to focus on getting from the first step to the second step. Some of the UX goals were to validate people's feelings, make sure they are not alone, walk them through the process, make it easy to contact and connect. Some of the more complex things were how to provide an anonymous service, mitigate harm, reduce risk, protect young person's privacy. Here, we ordered everything from the words to the iconography. Adults designing for other adults and each other, (inaudible) was pretty awesome. We had complex situations of high distress when people are using these steps. I mentioned we had a declining conversion rate. And when the young person tells us now feeling overwhelmed and unsure and dealing with a panic attack or are anxious, they do not want to explore the whole site finding the information in it. This new site allows us to integrate the product easily. Accessing next step is not hidden in a banner or a reference, it is now available on everything a page. It makes the product way more accessible, but it is also more familiar because we have a permanent icon, which is popularised through social media. How do we protect young people's privacy? How do we make it safe to use? We opted for the
3. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) Page 3 of 4 four digit pin to protect the privacy of the session data if young passengers are due. It means the pain is entirely optional and is not required for access. Surprisingly, the pin was something everyone is passionate about so we had questions on whether we should generate and serve it rather than let people select the pin. These were the first hurdles. Control for young people was really important, so they can self select their pin. It takes on another dimension of futility for the segment of young people who want to save the results and return to access them again or take a different pathway to better support options for different issues at different times. If a return, they enter an incorrect pin three times, they they will need to start a new session. This later we did not need to collect information. This is a decision that was difficult to make because we had to think about privacy. How can we get young people from the first step to the second step? I mentioned a long list of symptoms. One of the biggest experiences to us was retaining the list of symptoms, because it covers a good range of represented topics that can affect young people and their daily lives. Things like body, food, exercise, right through to self-harm and suicidal ideation. The attrition rate from step one to step two was way too high at over 80%. The first state is telling people that the list is long, good start. The long list was retained, scrolling was retained and that important features that were identified for people who don't know what they are expanding, one of the goals of Reach Out is to help people understand their list. We had a search for young people who knew exactly what they were going through. A group of young people who can conceptualise their issues in a group like relationships. They came back and edited those and pinned it to the top. So, personalisation is an interesting one. Our challenge was to personalise, to a degree, but not alienate data privacy for young people. We ordered the amount of steps it takes for young people to get to the recommended support option and as they are represented at a local state level, it is most relevant, we localised the area so young people did not have details exact the way they were. Less data input. Young people should not have to think about details that do not matter in the time of distress. Reducing the burden for them. Importantly, that level of data reduces stress from choice. We also don't request personal details from young people and only ask for the bare minimum input to give them that support augmentation. So, how do we not diminish the context of high distress? To mitigate harm, Reach Out has a duty of care framework that we draw from. It promotes safety and equity, having confidentiality. The first immediate question to satisfy was around immediate danger. If a young person selects one of the options that is deemed as high risk such as, "I feel the world would be better without me." Something is triggered and young people are directed to emergency support like Lifeline.
4. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) Page 4 of 4 Mitigating time, once we can get past the crisis moment the question is more how we can help guide young people to the next step without using diagnostic language. Young people tell us they have a preference for language that focuses on the issue that they are experiencing. How they are feeling. Symptom- and feeling-based rather than diagnostic criteria for mental health disorders all use of clinical terminology. There were a couple of challenges in reducing ambiguity around language and UI. You can see two screens here. On the left, as an adult user I loved the design language that our cocreator presented to us. On closer inspection, the language was not bound to something like the diagnostic manual. The next thing was gender. It was non-binary. We consulted a clinical organisation group. Whenever we had to make a critical-based evidence call, we worked with organisations individually. Our clinical advisory group was unanimous in their feedback that it was all ultimately a distraction and the final screen is on the right-hand side. I mentioned we also needed to better understand why young people are spending time on each step. So, the first step there were no shortcuts. The third cut, it was difficult to understand. When we look closely at the data when young people are selecting how much the issue affected them, they were spending an average of 30 seconds to make the decision. It has also been a slider and we didn't understand why. This was a moment of reflection. At this point in the process, I am present has selected their symptoms and chosen an issue to focus on. There were still taking that 27 seconds to decide how much it was affecting them. That led us to decide every step of the process needed user selection and confirmation of that selection to allow that young person a moment for pause and reflection and a decision-making process at each step. It can be clunky for all other products but it felt entirely appropriate for this one. When you remove the attritional one-on-one help model and ability for human interaction and building trust between the patient and clinician, you have to rely on smaller interactions to build trust. Provide encouragement and not diminish the context of high distress. One way to do that was to provide familiarity and for young people, emojis. They still love them. According to research that was conducted in the Western Health District, young people prefer them. Young people tell us that the use of emojis is warm and represent a motion well, but rockets and fire engines are out. They removed the need for a young person to identify themselves in an image and identify the emotion. Rather than wondering whether it looks like you, you can just focus on what they are expanding. Next fast, we lodged with a subset of users. Iterate and integrate with our partners like the University of Melbourne to reach more young people. Just a quick shout out and thank you to our co-creators. We have an internal digital service delivery and research team and also we worked with an experienced studio in Sydney. (Applause)