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Rare disease patient insight & engagement 
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Digital Mapping to Enhance Engagement with Patient Advocacy Groups

Challenge

A global biopharma client sought to better understand the digital presence and capability of key Patient Advocacy Groups (PAGs) across multiple countries. The objective was to identify engagement opportunities by assessing their online capabilities and pinpointing areas for collaboration.

Approach

To achieve this, a data-driven and structured digital mapping project was executed:

In-Depth Desk Research
  • Multi-Country Assessment: Local researchers in 12 countries evaluated the digital footprint of over 50 Patient Advocacy Groups (PAGs).
  • Digital Maturity Ranking: Using the proprietary swii.ch digital maturity ranking scale, PAGs were scored across 5 key criteria: website functionality, social media presence, content relevance, audience reach, and engagement activity.
Custom Data Visualization
  • Power BI Dashboard Integration:
    • Collected data was visualized through an interactive Power BI platform, offering real-time insights.
    • 30+ data points were tracked per PAG, including website traffic, social media metrics (follower count, engagement rates), and collaboration networks.
  • Entity Mapping: Relationships between PAGs and other healthcare stakeholders were mapped to identify collaboration hubs and influence networks.
  • Opportunity Mapping: Visual overlays highlighted high-potential PAGs for immediate outreach, along with specific areas where support could boost their online impact.

Outcome

The research provided comprehensive insights that helped the client refine their PAG engagement strategy:

  • Digital Capability Analysis:

    • 60% of PAGs demonstrated moderate digital maturity, signaling opportunities for growth in areas such as audience engagement and content strategy.
    • Only 20% of PAGs had optimized their websites for mobile users, presenting a key area for potential support.
  • Entity Relationships:

    • Identified 10 highly connected PAGs that served as collaboration hubs in their regions, making them ideal partners for strategic initiatives.
  • Engagement Opportunities:

    • Revealed 3 primary gaps PAGs faced: limited social media strategy, lack of tailored digital tools, and insufficient collaboration with biopharma organizations.

Impact

Armed with this data, the client was able to:

  1. Tailor Engagement Strategies: Targeted key PAGs with personalized outreach plans based on their digital maturity and needs.
  2. Enhance Collaboration: Partnered with 5 PAGs to deliver digital training and resources, helping improve their online reach by 25% within 6 months.
  3. Strengthen Partnerships: Built relationships with influential PAGs that resulted in a 40% increase in co-hosted patient advocacy events.

Key Takeaway

Digital mapping, powered by comprehensive metrics and data visualization, enables organizations to identify and act on opportunities for deeper engagement with Patient Advocacy Groups. By understanding the digital landscape and tailoring strategies, biopharma companies can foster impactful partnerships that amplify advocacy efforts.

Contact us to discover how digital mapping can help you enhance your relationships with Patient Advocacy Groups.

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