swii.ch Logo
Rare disease patient insight & strategy
Get in touch
swii.ch Logo
Rare disease patient insight & engagement 
Get in touch
swii.ch Logo
Rare disease patient insight & strategy
swii.ch Logo
Rare disease patient insight & strategy

Multichannel Strategy to Amplify Rare Disease Awareness

Challenge

A global healthcare client aimed to develop a multichannel awareness strategy for an ultra-rare disease targeting undiagnosed patients and their families across Europe. These individuals, often lost in the diagnostic odyssey, faced fragmented symptoms and struggled to navigate an overwhelming amount of disconnected information. The challenge was to analyze their information behavior, understand search habits, and create a strategy to guide them toward trusted resources and a potential diagnosis.

Approach

A comprehensive and patient-centric approach was implemented, with a strong focus on understanding information behavior:

Information Behavior and Search Analysis

Understanding how patients and families seek information was a critical first step in designing an effective strategy. Key actions included:

  • Search Journey Mapping: Conducted 8 patient and caregiver interviews to identify how they approached symptom research online, including:

    • The use of search engines, keywords, and phrasing.
    • Reliance on trusted sources, such as medical websites, advocacy groups, and forums.
    • Key moments when patients transitioned from independent research to consulting healthcare professionals or patient advocacy groups.

  • Barriers to Search Success: Analyzed gaps and pain points, such as:

    • Confusion caused by medical jargon or inconsistent information.
    • Difficulty identifying trustworthy resources amid an overwhelming volume of results.
    • The emotional toll of repeated "dead ends" during the diagnostic journey.

  • Insights into Information Priorities: Identified the types of information patients prioritized, including:

    • Symptom explanations and possible causes.
    • Stories of lived experiences from other patients.
    • Guidance on when and how to seek medical advice.
Collaborative Development
  • Patient Advisory Board: Worked with a board of 5 patient advocates to validate insights and co-develop strategies addressing the barriers identified in the search analysis.
  • Localized Resources: Created tools and materials designed to align with how patients search for and consume information, tailored to European languages, cultures, and healthcare systems.
Patient Ambassador Program
  • Ambassador Contributions: Integrated patient ambassadors into the strategy to share their experiences navigating the diagnostic process. Their stories were optimized to match the search patterns of undiagnosed patients, appearing on patient advocacy group websites and educational platforms.

Outcome

The focus on information behavior and search analysis allowed the strategy to deliver impactful results:

  • Persona Development:

    • Defined 3 key personas based on search behaviors:
      1. "Symptom Seekers" who rely heavily on search engines to understand their condition.
      2. "Community Navigators" who prioritize patient forums and advocacy group websites.
      3. "Professional Guidance Seekers" who look for resources to prepare for consultations with healthcare providers.

  • Tailored Resources:

    • Developed 3 primary tools aligned with personas:
      • A curated list of trusted websites and advocacy groups optimized for common search queries.
      • Educational content simplifying medical jargon and improving accessibility.
      • An FAQ guide designed to address common concerns and provide direction for next steps.

  • Enhanced Search Guidance:

    • Created a step-by-step framework for undiagnosed patients, helping them refine their search queries to yield more relevant and trusted results.

Impact

The information behavior analysis and tailored resources produced meaningful outcomes for the client and the rare disease community:

  1. Improved Awareness and Search Effectiveness:

    • Patients reported feeling 40% more confident in their ability to identify trustworthy resources after using the curated tools and guides.

  2. Increased Engagement:

    • Patient advocacy groups noted a 15% increase in website traffic, as materials directed patients to their platforms for trusted information.

  3. Empowered Decision-Making:

    • Feedback from ambassadors and PAGs revealed that patients were better equipped to seek appropriate medical advice, shortening the time spent on ineffective search strategies.

Key Takeaway

Understanding information behavior and search patterns is crucial in guiding undiagnosed patients and their families through the diagnostic odyssey. By tailoring resources to align with how patients search and consume information, organizations can provide meaningful support, improve trust in digital resources, and amplify rare disease awareness.

Contact us today to learn how to leverage information behavior insights to enhance your patient engagement strategies.

swii.ch Logo
Rare disease patient insight & engagement
© swii.ch Health 2024.
Privacy Policy
We use cookies in order to give you the best possible experience on our website. By continuing to use this site, you agree to our use of cookies.
Accept