Highlights

• We gained a significant understanding of how carers process information during the project's development. Continuous communication with carers helped us to develop appropriate information hierarchy to enhance the user experience for carers at various levels.

• Throughout this project I was able to build valuable relationships with both executive level members and support coordinators at MND organisation in Victoria and Queensland.
  

• There is no room for meaningless jargon and buzz words when working with users in such a sensitive space. One of my biggest achievements from this project was gaining the trust of users.

Project Summary and Process

Motor Neurone Disease (MND) is a progressive neurological disease that destroys motor neurones responsible for carrying messages from the brain to the muscles in the body. Carer's face significant challenges in locating valuable information and relevant support for each stage of the disease progression.

The Carer's access portal was an idea that I had in early 2022 and I spent 6 months working closely with experts at the Motor Neurone Association of Victoria. During this time I collaborated with the carer project coordinator at MDN Victoria and carer's in their network.

Together we designed, tested and refined the concept for a knowledge sharing service in the form of a mobile phone app.

Problem

Carers of people with Motor Neurone Disease struggle to access relevant services, which is made worse by a lack of easy-to-understand information resources.

Solution

The Carer's Access Portal uses storytelling to contextualize information resources to help carers understand complex services. The application also serves as an online platform that bridges connections between service providers and carers by replacing paper processes.

Connecting with users

I worked with contacts at MND and ME and MND Victoria and started building a network of carers and support coordinators that I could contact at regular touch points. I met with each user individually and introduced the project. I then interviewed the users to understand their experiences with support available to get a better idea of what was working and where specific pain points were resonating.

Digging for unspoken information

Following the completion of interviews with Carers and Support coordinators, I found myself with a substantial collection of information and experiences that required thorough comprehension and analysis.

Devoting a week to the task, I meticulously reviewed interview transcripts and recordings to extract valuable insights. These insights would prove instrumental in subsequent processes such as affinity mapping and empathy mapping, enabling the identification of recurring themes and patterns.

Challenge

Given the sensitive nature of the subject matter being discussed, my priority was to create a safe environment for all participants during the interview. To achieve this, I focused on maintaining a highly conversational tone and ensuring that participants felt comfortable expressing themselves without any hesitation.

I discovered that by avoiding technical jargon and fostering an open atmosphere, I not only established a safe space but also encouraged participants to freely share their thoughts and delve into their deeper concerns.

An affinity map a day keeps irrelevant journeys away

I had collected a few insights and I spent time grouping these to form key insights. This technique allowed me to define three user stories that informed the creation of user flows. I was able to validate my design decisions and communicate these to stakeholders at MND Victoria and MND and ME QLD.

Defining user stories

• I want to be able to find easy to understand information and what health services are available to help, so I can better understand who to talk to and when.

• I want to be able to quickly record any changes in symptoms or body function, so I don't forget when we meet with the doctor next.
  

• I want to be able to connect with support without having to leave my house, so I dont take time away from my caring duties.

Next Steps

The feedback received is being reviewed to extract actionable insights for the project's further development. Additionally, more prototypes are being sent out for testing and improvement.