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Journey Maps Highlight Real Patient Needs to Empower Change

ALS Canada came to Pivot to determine how best to provide people living with ALS with the right information at the right time.

Challenge

ALS is a disease affecting nerve cells in the brain and spinal cord. As nerve cells are destroyed, muscles begin to weaken, which leads to gradual paralysis. ALS is fatal. Approximately 1,000 Canadians are diagnosed with the disease each year and most people live for just 2-5 years post diagnosis. ALS can affect people at any age and its non-linear symptom progression is very difficult to map. It is a relatively unheard of condition with little funding yet the effects on those living with ALS are profound and disturbing.

ALS Society of Canada (ALS Canada) approached PIVOT to determine how best to provide those living with ALS the right information at the right time.

Solution

To determine the best way to present timely information to people living with ALS, PIVOT took a Service Design approach to the project—to understand who is affected, how and when; and to determine how many people are involved in this care from a larger, service level perspective.

We conducted 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 as well, we provided a detailed assessment of the opportunities within the journey for people living with ALS and their caregivers.

A snapshot of the Service Blueprint developed by PIVOT outlining people living with ALS and their care journeys.

Impact

PIVOT presented key findings and tangible checklists of recommendations across all existing platforms of ALS Canada’s communications. We also explored a new concept design with the purpose of empowering 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 learn from our findings and communicate to other agencies the need for better supports and more strategic dissemination of information for people living with ALS and their caregivers.

Following the presentation of our findings to ALS Canada, interest in PIVOT’s research picked up in global healthcare circles. PIVOT was invited to present its 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. They are smart, strategic and flexible, and strike a great balance between meeting client needs while staying grounded in informed design. The 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.”

— VP Marketing & Public Affairs, ALS Canada