From Research To Action for Patients

It is exciting to see the results of research providing strong, positive benefits to patients. That was the take-away from a joint presentation made by Inspire and Strongbridge BioPharma at the Pharmaceutical Market Research Conference (PMRC) this month.

Last fall, Strongbridge BioPharma engaged Inspire to find the “rarest of the rare”- people who have the exceptionally rare condition, primary periodic paralysis or PPP. There are between 4,000 and 5,000 diagnosed individuals in the US.

Finding the Rarest of the Rare for Market Research: Patient Journey Mapping Through In-depth Interviews describes how Inspire leveraged its large social health network to rapidly recruit people with this rare genetic neuromuscular disorder. In just four days, 15 Inspire members affected by PPP completed the background survey. Half of the group then participated in in-depth interviews.

These interviews captured moments of the patient journey. Compilation and linguistic analyses preserved the descriptive language patients used to explain their condition and their experiences, especially their diagnosis journey. Their journey is plagued with misdiagnosis, being bounced between multiple providers and being told that their condition was “in their head.”

Results identified specific messaging issues in marketing copy. In the example below, patients felt that the word “activation” in the tagline needed to be replaced. They offered other words like “hopeful possibilities”  or “control.”

In this example, patients commented on an example brochure. As one patient noted, “How common is primary periodic paralysis?” is not the first item that she would be interested in seeing.  Instead she would want to know the symptoms.

Moreover, the research found significant information deficits among patients living with PPP and discovered a lack of support for these patients and their caregivers. To address these two areas, Strongbridge Biopharma is sponsoring an online community on Inspire.

Strongbridge BioPharma saw this as an opportunity to help patients with PPP and their caregivers find support.  This support and discussion group provides space for patients with PPP and their caregivers to find others, connect and discuss important topics related PPP.

The research gave a voice to and validated the experiences of an under-studied group and provided Strongbridge BioPharma with the insights they needed to immediately move forward with actionable engagement strategies.

As one of the interviewees said,

It’s just so nice to hear that anybody is interested in patient care, especially for such a difficult and frustrating health condition that usually doesn’t get any attention or support. So this is exciting.”

See our case study, “Finding the Rarest of the Rare For Market Research”

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Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.