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INNOVARA DIGEST: ENGAGING PATIENTS WITH RARE DISEASES

  • News
  • René Meade, Learning & Development Manager
According to research published in the Journal of Rare Disorders, the mean length of time from symptom onset to accurate diagnosis for patients with rare diseases was 4.8 years. In the meantime, these patients visit an average of 7.3 physicians. Most rare diseases have no cure or treatment, and patients are left feeling demoralized and isolated. How do we reach and engage with these patients? This week’s Innovara Digest uncovers 3 strategies you can begin to implement today.
  • patients with rare diseases - journey
    Understand the patient journey: In order to understand the patient journey, a report produced by Cello Health recommends gathering in-depth insights directly from patients to capture the whole patient experience. Then, use those insights to identify pivot points for earlier referral, diagnosis, and treatment. Perry Sternberg, Shire’s EVP and Head of US Commercial, agrees: “If you don’t suffer from the rare condition yourself, it’s hard to understand what it’s like. Only patients can tell us that. …the patient journey for us starts early when we get close to the community to understand their needs. This starts way before a product is developed.
  • patients with rare diseases outreach
    Have a clear outreach plan: The aforementioned Cello Health report recommends the following methods: face-to-face advocacy, smartphone and web apps, scientific publication, podcasts and webinars, and interactive newsletters. Forrest King, founder of Juice Pharma, recommends using AI and voice-based assistants to “enable a more humanistic and personalized experience, allowing all customers to have a more rewarding and less confusing experience with the pharmaceutical company and the brand.” Pharma and biotech ad agency Cambridge BioMarketing has made the news recently with a subway car wrapped in zebra stripes, which was filled with statistics on patients with rare diseases. The Rare Outreach Coalition is teaming up with several pharma companies to launch the Rare Disease Film Festival in Boston on October 2–3.
  • patients with rare diseases - community
    Create community: According to PharmaVoice’s True Advocates: Patient Communities for Rare Diseases, rare disease communities help patients feel better informed, which leads to higher engagement. Because patients with rare diseases are, well, rare, social media has become a critical tool in bringing them together. These online communities have been springing up rapidly in recent years, supported by Alexion, Shire, Rare Diseases International, and others. Tread carefully, warns Maria Whitman, managing principal of ZS: “a company looking to support a rare disease community has to let the community lead the way and champion patient-directed engagement.”

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Communication & Engagement is one of Innovara’s core competencies in sales, marketing and medical affairs. To see which experiential learning courses cover this competency, download our development grids