Designing for people in crises

Transcript

1. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) JONATHAN ROPER: Thanks for coming. What we're covering is really about a project that (inaudible) in Melbourne for the Victorian Mental Health Tribunal. I am not here on behalf of the tribunal. I will talk a bit about the context that the tribunal exists in and talk about what we did, how we conduct our research and the design experience. The overriding purpose of understanding is when people are in mental crisis, they can be subject to a compulsory treatment order. That is if they are endangering themselves or someone else, if there is a feeling that it is imminent, they can be subjected to an assessment order without held involuntarily normally in a psych ward. After the assessment. It can be for 28 days, held in a psych ward for compulsory treatment. At the end of 28 days, if your treatment team thinks they want you to continue that treatment compulsorily there is a meeting and you have to go to the Mental Health Tribunal. It was set up in 2014 under the provision of the Act and it is to look after the rights of patients. They ask why you would want to prolong involuntary treatment. The tribunal has about 8,000 hearings every year and their aim is to move people from involuntary treatment to voluntary treatment. (Inaudible) it is optional for a patient to appear at the tribunal and they can bring someone with them, but nearly half of all patients do not come. The tribunal is made up of medical staff, community members, a mix. They want to involve the patients in this process. From a patient point of view, this came out from our research as well, most have not heard of the tribunal before they get this notice. You think, they are getting this notice when they are subject to compulsory treatment, so they are in a very traumatised space and are often confused. They don't have access to the internet, often, or it is extremely restricted — it would be in a lockdown ward, for example. There are, there's a relationship between treating teams, the staff, families who are often in crisis themselves, and carers. Into this, we responded to a brief to redesign the website. The original website was put up in 2014 in a hurry (inaudible). Our brief was to redesign the website from a UX perspective. A lot of us have had health issues, mental health issues. It is great for us to be able to work on a project that matters a great deal to patients and their outcomes, and carers and families. What we did in our approach was we had to understand the context, users need, their goals and tasks, what they are trying to achieve. We got great background from the team and the staff there, but we observed the tribunal hearings. It is simple, you can go on the website and see rare examples, there are three people in the tribunal, the treating team and a space for the patient and if they want to bring a nominated person, they can. Sometimes they are in person, sometimes through video, if video fails they are through phone. (Inaudible), we need to talk to patients. They have been throughout the process. We needed to also talk to people who could potentially experience the Mental Health Tribunal and carers in
2. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) Page 2 of 4 that relationship, as well. Doing research is 50% of the battle. For us, how do you going to this incredibly sensitive area and find the right people to talk to? The great thing about the Mental Health Tribunal is there is a very strong network... The organisation interacts very closely with the community and advocacy organisations. You enter into a family of organisations here. We were able to access the advocacy and carer groups which manage recruitment on our behalf. In terms of details, we did a two-page invitation to the interview which really spelt out what the project was about, that their participation was voluntary, that they could be a friend or family member along, that the interview would take place where they liked, they could finish the interview at any time if they felt uncomfortable, where they could get help if the interview raise issues. Then, we did the interviews. We did about eight with patients and carers. It is hard talking to people about their traumatic experiences. It is really important for us to be very open and no rush. We used very simple questions which you would use in any area but have relevance here — tells a bit about your situation — and let the participant really control the flow of information here it probes were minimal, we let people talk. Then, we used reflective questions like, "What you do now? What you know now that you wish you had known before?" Helping them reflect back on those experiences. And, "What is your advice to someone who might attend the hearing?" Ways they could control the situation was they could distance themselves from the answers they were giving and control the flow. We were very grateful for the opportunity to do that work and do those interviews. As part of those interviews we had to allow people to vent, and they did. That is why it is important not to rush. What we found is that people had little access and were in a traumatic space, so what good is a website in all this? We had you understand who we were designing for, and understand we were designing for some patients who do have access and we had you also understand... How do we support carers and families supporting patients through that crisis? How do we target information that really works? So, we sought to redesign the website based on looking through the patient's eyes. Primarily their perspective. Understanding the patient's goals which we clarified... "Help me to prepare for my hearing. Help me understand compulsory treatment." There is a relationship between compulsory treatment and the hearing but they are not the same thing. Let me just go back, just for a second. What we did, we heard a lot of stuff and got lots of stuff done, we mapped all of this stuff and started to try to documented. We would replay that with the clients very regularly. We would tell the story about what we heard, what we think it means to a whole variety of people and that requires really refining and getting to the heart of what is going on. After this initial research, we had ongoing usability testing throughout the rest of the process.
3. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) Page 3 of 4 What did we hear that came out? People in traumatic states, you have the patient and then families and carers sharing the crisis, it needs to support them so they can clearly... You need to spell out what their rights and options are. The design has to be simple and pared back, welcoming and digital and mobile first. We had to strip it back. People in mental crisis as can be sensitive to colours, movements, overloads. How do you pair back and solidify. We had to clarify the processes of the tribunal on the website. In terms of developing the use of face had to do it hand-in-hand with content. We had to take 40 pages of content and quantity down to four pages. We had to strive for radical simplicity in what is a regulatory framework and we used words that came out of people's mouths. Along the way, we closely involved stakeholders, staff, advisory group, community groups along the way so there were no surprises for them. So this was our first good idea, a conversational interface. Patients talked about wanting someone to talk them through it. To have someone to talk to and explain what was going on. We can't provide that on the website but we took the main things patients were really focused on, you know, a tribunal hearing scheduled and they don't agree with the tribunal decision or with their treatment, and we thought about that as a conversation. People arrive at the website and that worked to a degree, but we have this beautiful conversational interface, and then at the top we had find help, compulsory treatment, and what is the relationship in terms of the experience? This was a troubling relationship for a long time, we took the idea of the conversation, and we turn that into the backbone of the website. Working through that experiment of conversation, helped us to simplify as a whole. How to prepare for a tribunal hearing, and, "I don't agree with my treatment..." For lots of reasons, that turned out to be the simplest way that we could do it. We didn't want to have any fancy features, we were not trying to win a design award or have any snazzy text, we wanted it to be dead simple, fast, and pared back to use. We wanted the click-through journey on the site to be very simple and direct. Particularly, working in mental health, we come in as a design consultancy, but it is a team sport, we have a lot of people in the team with lived experience, community members, psychiatrists, you have to involve all of these people in the work that you are doing, because they carry it through. We do the research, and then we tell the story about what we have found, and we invite feedback, we design, and then, the big thing for us, once you have got that narrative flowing, and then you define the goals, clearly establish the goals based on evidence and research, then you get agreement from the community that these are the goals. Than the design process, has its rocks and hurdles, but then you are on the right path. Everyone is on ball with the goals and research. Then as it progresses, we flick back to the goals, is it in line? Yes. Or no, then we go back to the drawing board. In summary, we were able to make things better, what became very clear to us, if you are
4. UX Australia 2019 -29th August, Breakout session (AUUXAU2908B) Page 4 of 4 working on our website or a app, you just get a slice of people's experience, it starts over here, with the patient receiving a notice of hearing, which is like a blaring siren, and then we got to look at these notice of hearings, and it is like getting a parking fine. Even the name of the tribunal, makes patients and carers think of the footie tribunal, like they are going to be suspended. This is part of the journey that we are not responsible for, but we are mitigating. For some people, the journey ends well, for others it is endless. So, we are very conscious of the limited scope of our work, what we can achieve. But we try and do that really based on what we have understood from patients, what we have heard from them, we have paired things down to make it as simple as possible for them and their families. We are showing how the UX toolkit, can help in developing patient-centric products, and bringing everyone on board. Thank you.