Journey Maps Discover Real User Needs to Empower Change
ALS Society of Canada
Stakeholder & User Interviews
Service Design Blueprint
ALS is a disease that affects nerve cells in the brain and spinal cord. As nerve cells are destroyed, muscles begin to weaken which leads to a gradual paralysis. ALS is fatal. Approximately 1,000 Canadians are diagnosed with it each year and most people live for just 2-5 years after diagnosis. ALS can affect people at any age and its non-linear symptom progression is very difficult to map. It’s a relatively unheard of disease with little funding yet the effects on those living with ALS are profound and disturbing.
ALS Canada came to Pivot to determine how best to provide people living with ALS with the right information at the right time.
To determine the best way to present and provide information, Pivot took a Service Design approach to the project—we needed to understand who is affected, how and when, and how many people are involved in their care from a larger, service level perspective.
We undertook several user interviews to validate project personas and bolster our understanding of both patients and caregivers. With these learnings our team was able to act as the patient-voice throughout stakeholder meetings during the research project. Key user journeys were mapped into a blueprint to outline a big-picture overview of the needs and a detailed look at the opportunities within the information journey for people living with ALS and their caregivers.
We presented key findings and tangible checklists of recommendations across all existing platforms of ALS Canada’s communications. We also explored a new concept design meant to empower those affected by ALS to take action and advocate for their own health by gathering information in their moment of need.
Our strategic Informed Design research methods allowed project stakeholders to not only learn from our findings but also communicate to other agencies the need for better supports and information dissemination for people living with ALS and their caregivers.
Soon after the presentation of our findings to ALS Canada, the research and project picked up interest in global healthcare circles. Pivot was invited to present the Informed Design process and User-Centered approach at the International Alliance of ALS/MND Associations’ annual Allied Professionals Forum.
It was an absolute pleasure to work with the Pivot team. You are smart, strategic, flexible and strike a great balance between meeting client needs while staying grounded in informed design.
The Pivot team did an amazing job understanding and empathizing with our community and the reality of living with ALS. I appreciated that the recommendations and perspectives brought forward by Pivot were grounded in the needs of our community, always reminding us of WHO we are creating for.
Soon after the research was completed, Pivot was invited to present the Informed Design process and User-Centered approach to this Service Design project at the International Alliance of ALS/MND Associations’ annual Allied Professionals Forum.