Collaborating with Patient Advocacy Groups to Educate the Marketplace

Insights are drawn from survey responses from a total of 58 research participants at 43 pharmaceutical companies. More than a dozen in-depth interviews were conducted to gather more detailed information pertinent to this study.

Study Snapshot

This performance benchmarking study probes best practices in working with Patient Advocacy groups, in particular groups that deal with socially sensitive conditions.

Follwing are the key topic areas discussed in-depth with supporting narratives, metrics and charts:

• Understanding the “advocacy” landscape
• Effective practices for working with potentially hostile patient advocacy groups
• Advocacy structures that work best
• Advocacy tools
• Critical competencies of Advocacy professionals
• Advocacy Lessons learned from socially sensitive or stigmatized disease areas
• Profiling Advocacy Group experience & expertise

Key Findings

Mapping The Advocacy Landscape To Know Where To Start:

Assess the landscape of advocacy and community-interest groups to understand the broad spectrum of players, special interests and possible collaborators. Different groups may prove more valuable collaborators at different stages of the product and disease lifecycle. Some groups will be friendly; some groups may prove hostile. Creating an advocacy “topographical” map is useful to strategic advocacy planning.

• Structuring High Performance Bio-Pharma Advocacy Groups:

Advocacy structures are rapidly evolving. Hybrid bio-pharma advocacy structures are most common. Internal advocacy organizations are evenly distributed across brand-focused groups, centralized groups, therapeutically focused groups and those with a mix of brand and therapeutic elements. Higher-functioning advocacy functions have developed a system for measuring the effectiveness of activities and relationships. Soft metrics or no metrics are most common.

• Tactics to Minimize Opposition from Patient Advocacy/Special Interest Groups
• Critical Considerations when Managing Advocacy Collaborations regarding Controversial Therapies
• Effective Market Education Approaches for Controversial Conditions
• Common Biopharma Patient Advocacy Group Structures
• Effective Communication Approaches for Advocacy Interactions with Pharma
• Effectiveness Measures for Pharma Advocacy Group Activities and Relationships
• Number of FTEs Dedicated to Patient Advocacy Activities
• Methods for Prioritizing Objectives When Advocacy Groups work with Multiple Brands
• Rating Importance of Patient Advocacy Collaborations at Different Lifecycle Stages
• Rating Importance of Education/Program Support Types by Key Lifecycle Stages
• Best Approaches to Seed an Early Relationship with Patient Advocacy Groups
• Rating Importance of Platforms for Delivering Education to Patient Advocacy Groups
• Best Approaches to Deploying Advocacy Grants for Early-Stage Support with Groups
• Marketplace Factors to be Considered Regarding Patient Advocacy Issues
• Imporatant Issues Facing Patient Advocacy over Next Three Years