NDR: Visioning Workshop Update

On Monday 1 July 2019, a diverse and passionate group of stakeholders came together at the Mercure Sydney to collaborate on the vision for the Neuromuscular Digital Resource.

The full-day workshop was facilitated by a team from Meerkats, the digital agency who has been appointed to develop the Resource in partnership with MDF.

The workshop involved a series of exercises that sought to understand scenarios and the associated tasks, pain points and outcomes for each of the user’s ‘core needs.’ These core needs were developed in response to findings from MDF’s extensive Community Consultation process, which involved focus groups and a nationwide online survey. Core needs included:

  • ‘Practical Preparation’ – preparing people living with a neuromuscular condition with ongoing, accurate information on their condition and the know-how to get on with everyday tasks.
  • ‘Connect with People Like Me’ – discussing everyday life concerns and wins with people who are going through similar challenges.
  • ‘Inspiring Evidence’ – celebrating and demonstrating how other people with neuromuscular conditions are doing ordinary and extraordinary things.
  • ‘Information Sharing’ – helping others to better understand neuromuscular conditions and how to best support and interact with people living with neuromuscular conditions.

Finally, the Meerkats facilitators posed the question, “Which person on Earth (living, or from the past, real or fictional character) would we want to embody in the resource?” Participants were asked to imagine that there was new technology that would apply the heart and mind of someone to the Resource – who would that person be? Hugh Jackman was a popular answer – only time will tell how this will manifest in the Resource!

The Visioning Workshop provided an opportunity for members of the neuromuscular community to not only contribute to the development of the Resource and its content but also to connect with other members from around the country.

Participants included members of the project’s leadership group, made up of CEOs and leaders from Muscular Dystrophy organisations from around the country, as well MD organisations’ Community Services Managers, MDF Board Members and the Project Team. These participants contributed their extensive knowledge of and experience in service provision, digital access, and the disability and not-for-profit sectors more broadly. A number of these participants are also connected to the cause through either their own lived experience or a family member’s experience living with a neuromuscular condition. One such participant was MDF Board Member Victor, who shared his experience being diagnosed in the pre-Internet era and the challenges he faced finding information on his condition. He contrasted this with his experience of his son’s diagnosis, twenty years later. Services Coordinator Kim shared her memories of her brothers’ Duchenne diagnosis and her family’s experience having to build their own accessible housing.

Most importantly, members of our Community Reference Group (CRG) were also invited to participate. The CRG will be consulted throughout the Resource’s development to provide feedback on its functionality and content. Coming from a broad range of backgrounds, each participating CRG member contributed a unique perspective, as they either live with or care for someone living with a neuromuscular condition. CRG member Tristram was able to share his experiences navigating the education system, preparing an NDIA plan and working in the digital access space.

Overall, the Visioning Workshop provided an excellent opportunity to formally kick-off the NDR Project and bring together a broad range of stakeholders to contribute to a unified vision for the Resource. The project now moves into the Content and Design Development stage and is due to launch in March 2020.