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Collaborating with Patient Advocacy Groups to Educate the Marketplace

ID: PSM-242


30+ Info Graphics

23 Data Graphics

60+ Metrics

100+ Narratives

Pages: 125

Published: Pre-2019

Delivery Format: Shipped


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Strong relationships with advocacy groups are fundamental for educating the public on most recent medical happenings, especially on socially-sensitive conditions and treatment options. This comprehensive study analyzes the best practices from leading companies, narrates their findings, details valuable statistics and, examines ideal structures and skill sets for pharma groups that deal with advocacy groups and emerging trends and challenges in patient advocacy.

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.

Industries Profiled:
Pharmaceutical; Medical Device; Health Care; Consumer Products; Biotech; Diagnostic; Manufacturing; Research; Chemical; Service; Technology; Media

Companies Profiled:
Abbott Laboratories; Baxter Healthcare; Solvay Pharmaceuticals; Vital Therapies; Triple S; Covidien; Savient Pharmaceuticals; Anesiva; Abaxis; Astellas; Philips Home Healthcare; Thoratec Corporation; Amgen; Onyx Pharmaceuticals; Daiichi Sankyo; Purdue Pharma; Teva Pharmaceutical Industries Ltd; Ocimum Biosolutions; Genentech; Tibotec; King Pharmaceuticals; Allos Therapeutics; Johnson & Johnson; Theratechnologies; Infosys BPO; Discovery Chicago; Medrad; Talecris; IDS Canada; Becton Dickinson; GlaxoSmithKline; Novartis; Takeda Pharmaceuticals; Genzyme; Boston Scientific; Synapse biomedical; Nupathe; Eisai; United Therapeutics; Bayer; Bristol-Myers Squibb; ANS

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

Fifty-eight representatives from 43 companies shared their insights in the benchmark survey and more than a dozen agreed to interviews. Approximately half of the class represented top-50 bio-pharma companies.

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.
Table of Contents

Universe of Learning: Benchmark Class of Research Participants and Their Demographics 4

Key Insights, Findings & Observations 10

Understanding the Advocacy Landscape: How to Evaluate the Broad Spectrum of Advocacy Groups and Find Common Ground with the Best Allies 16

Managing Advocacy Relationships: Process Insights to Help
Build Lasting Relationships 34

Managing Relationships with Hostile Groups: How to Find Common
Ground and Avoid Making Enemies 45

Advocacy Communication Practices: Effective Approaches to
Communicating & Educating Patient Advocacy Groups 61

Structuring High Performance Pharma Advocacy Groups:
Advocacy Structures are rapidly Evolving 74

Critical Competencies for Advocacy Liaisons: Community Liaisons have
Critical Skill Sets 82

Advocacy Tools: How to Use Tools to Manage Your Relationships 94

New Technologies: Emerging Technologies Create New Channels &
Opportunities to Educate Patient Groups 102

Advocacy & Product Launch: Educating the Market is a Critical First Step 107

Current Trends & Future Directions in Patient Advocacy 111

Painful Lessons Learned, Pitfalls & Successes 116

About Best Practices, LLC 124

List of Charts & Exhibits

  • 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