The Loop
A community building Neuromuscular Resource Hub for Muscular Dystrophy Foundation Australia.
Building a community, not just a resource for Muscular Dystrophy Foundation Australia.
Visit: The Loop
Recognition: Finalist, Australian Web Awards 2021
Skillset: UX Lead, ideation, human-centred design, co-creation facilitation, digital strategy, content strategy, user testing, AA accessibility
The project at a glance.
When someone is first diagnosed with a neuromuscular condition (NMC), shock and grief is followed quickly by confusion. As a rare condition the information available is dense and convoluted with medical jargon that fails to recognise the human behind the condition. It’s easy to feel overwhelmed and isolated.
Muscular Dystrophy Foundation Australia set out to create an online resource that would act as an online companion - helping to connect the community with one another as well as practical, trustworthy information. Through a human-centred design process featuring multiple rounds of co-design, we created The Loop: an empathetic and community-reflective experience that connects people loving and living with NMCs access to carefully-paced, practical medical information and user generated lifestyle content and stories.
The approach.
Neuromuscular conditions are many, yet rare. In order to design a solution that was considered, empathetic and meaningful to the community, it was critical that the community was involved from the onset and kept in close consultation throughout all stages of design.
Being a geographically diverse group of individuals, and travel not always easy, we created an online customer reference group which helped us to keep the community involved.
Key stages during discovery:
Visioning workshop to unearth the most important issues the platform needed to solve and ideate with community members on how they might like it solved.
Platform personality workshop with community members to define how the platform should look and feel.
Ongoing testing of wireframes, IA, forum functionality, content to prioritise using the online reference group.
The solution, in a bit more detail.
The platform focused on delivering two critical features, amongst others, that were identified within co-design and interviews.
1) Medical yet empathetic condition based content that can be customised and used as a tool to communicate care needs to their support network
Due to the rare nature of most NMCs, they are widely misunderstood. This means getting the support needed from institutions like schools, workplaces and even health services, is often a challenge for many people living with NMCs; particularly having to educate their teacher, boss or GP on what they need. To lessen this educational burden on those living with NMCs, a tailorable condition guide was created. The condition guide contains plain speaking. carefully paced medical content, interspersed with community advice and tips. It allows people to easily tailor the guide to their specific health needs by adding or removing blocks of content and inserting their own notes. The guide is also able to be downloaded, so as to help facilitate better health needs conversations out in the world. This might include bringing a new GP up to speed on their needs or sending to a prospective University to ensure their needs can be met for their first day of classes.
2) A place where community members can easily share advice, tips & tricks, and their experience
A key discovery from co-design was the hurt caused by ‘inspiration porn’, whereby people living with disabilities are seen as inspirational purely on the basis of their disability. It was important for members of the community to hear, see and engage with voices like theirs. User generated content - tips, life hacks, advice and stories - became a central feature of the new platform enabling the community to seek out advice from those with lived experience on a range of topics, from house hacks to sex.
