Finding the Rarest of the Rare for Market Research: Patient Journey Mapping Through
In-depth Interviews

People with rare diseases have poorly understood patient journeys.  Recently, Inspire conducted a project for a client to identify unmet needs and uncover the frustrations and challenges of a group of hard-to-find patients with an extremely rare condition, Primary Periodic Paralysis or PPP which affects approximately 4,000 to 5,000 diagnosed individuals in the US.

PPP is an exceptionally rare genetic neuromuscular disorder which involves the ion channels in muscular membranes. Children of someone who carries the condition have a 50-50 chance of inheriting PPP.

With PPP, potassium, calcium and sodium ion channels can be affected.  Normally, ions passing across these membranes create the electrical charges that fire muscles causing them to move.  The balance of ions is very important and ion channels regulate this balance.  For people with PPP, the channels are not able to maintain a balance of ions when there are changes in the level of potassium in the blood.  This causes muscle weakness and or complete paralysis.

Access to the Rarest of the Rare

Twenty-five percent (25%) of Inspire’s 1.3 million members (at time of publication) have one or more rare diseases.  These large numbers, coupled with the responsiveness we see in members of trusted, supportive, relationship-based communities, increases the likelihood of successful recruitment.   In this case, our client, Strongbridge BioPharma, needed to connect with people affected by PPP.  In our case study, we describe how we met that challenge in just four days.

For the client

With the results of this project, Strongbridge BioPharma saw an important opportunity to become an information resource for these patients. We identified specific areas where patients had information deficits.  We also preserved the language patients used to explain their condition and their experiences. The client was able to rework their messaging and reach out in an effective way to these customers.

Using in-depth interviews to capture moments of the patient journey, followed by compilation and linguistic analyses of the interviews, we not only gleaned the steps of the patient journey but also preserved the descriptive language that enhanced understanding the patient’s viewpoint.  By mapping these patients’ journey, we provided a glimpse into the lived experience of being a patient with a rare disease.

To learn more download Case Study:  Finding the Rarest of the Rare for Market Research:  Patient Journey Mapping Through In-depth Interviews