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Best Practices in Working with Patient Advocacy Groups: Building Effective Relationships

ID: SM-185


8 Info Graphics

21 Data Graphics

295 Metrics

17 Narratives

14 Best Practices

Pages: 72

Published: Pre-2013

Delivery Format: Shipped


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Patient and professional advocacy groups play a crucial role in educating the marketplace on new medicines and treatments. For companies that are bringing new therapies to market, collaboration between bio-pharmaceutical organizations and advocacy groups offers the opportunity for a win-win partnership: advocacy groups receive support for programs and services and the industry benefits from the market exposure and, potentially, more sales.

This benchmarking study identifies effective practices for bio-pharmaceutical organizations seeking to better collaborate and manage relationships with key
patient advocacy groups. Our research also examines ideal structures and skill sets for interacting with advocacy groups and highlights emerging trends and challenges in patient advocacy.

This report features key benchmark metrics, executive insights and recommendations that can be used to map a path to future success in working with patient advocacy groups. The report additionally provides insight into how to work with patient advocacy groups regarding socially sensitive medical conditions.

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

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

Study Snapshot

This benchmarking study, based on benchmark survey data and executive interviews of 58 participants from 43 leading pharmaceutical, biotechnology and medical device companies, was conducted to identifiy effective practices for bio-pharmaceutical organizations seeking to better collaborate and manage relationships with key patient advocacy groups. This report provides benchmarks, insights and best practices in such key areas as:
  • Understanding the advocacy landscape
  • Identifying effective practices for working with potentially hostile patient advocacy groups
  • Identifying advocacy structures that work best
  • Employing advocacy tools for optimal effectiveness
  • Understanding the critical competencies of advocacy professionals
  • Advocacy lessons learned from socially sensitive or stigmatized disease areas
  • Profiling advocacy group experience and expertise

Key Findings

Among the many findings that emerged from this research were the following:

Assessing the Best Tools To Manage Advocacy Relationships:
Clear roles, responsibilities and relationship owners are key to effectively coordinating with patient advocacy groups. Relationship management with advocacy groups benefits from relationship ownership clarity, role and responsibility clarity, and process standardization. More than half of the benchmark class gave “relationship ownership” the highest effectiveness ranking. “Role clarity” also was deemed very important.

Structuring High-Performance Pharmaceutical Advocacy Groups:
Hybrid pharmaceutical advocacy structures are most common. Internal pharmaceutical advocacy organizations are evenly distributed across brand-focused groups, centralized groups, therapeutically focused groups and others with a mix of brand and therapeutic elements.

Relationship Management Approaches That Work:
Use key opinion leaders with advocacy relationships to help make introductions and provide insights into an advocacy group’s needs and objectives. A useful relationship-building tactic is to invite external advocacy group leaders to address a product team or franchise leadership group to articulate the advocacy group’s priorities, goals or concerns.

Table of Contents

Executive Summary
  • Introduction 5
  • Research Approach 6
  • Participant Demographics 6
  • Report Structure and Organization 8
  • Key Findings 9

Understanding the Advocacy Landscape 13
  • Utilize tools such as advisory boards and mapping to find points of common
    interest with advocacy groups 14
  • Respect special interest groups’ positions, but strive to articulate the broader
    issues and approaches to the condition/therapy 17
  • For sexual health therapies, use supportive advocacy groups to educate and
    publicize the impact on the patient population 19
  • Build coalitions that create a unified voice in the advocacy world and leverage
    educational resource investments 20

Managing Advocacy Relationships 22
  • Meet in person with advocacy group leaders in order to establish personal
    rapport and move beyond divisive issues 22
  • Develop and use diverse internal advisory boards to guide the company 23
  • Segment populations reach patients through the most effective use of group
    and peer-to-peer advocacy 24
    Managing Advocacy Relationships with Hostile Groups 27
    • Develop a structured approach for managing relationships to deal quickly and
      effectively with attacks from hostile advocacy or special interest groups 27
    Using Thought Leaders 29
    • Make Key Opinion Leaders a resource to advocacy groups to support the
      education of key target populations 29

Advocacy Communication Practices 35
  • Use science and humanity as the entry points to reach out to groups 35
  • Develop a rapid response team to manage advocacy issues 35
  • Employ simple tools to communicate complex ideas on treatments to general
    audiences 36

Structuring High-Performance Bio-Pharmaceutical Advocacy Groups 40

Critical Competencies for Advocacy Liaisons 46

  • Communicate performance publically to affirm patient commitment 49

Using Tools and Tactics to Successfully Manage Advocacy Relationships…. 53
  • Utilize new technologies to create new channels and opportunities for educating patient
    groups 59

Advocacy and Patient Launch 63

Current Trends and Future Directions in Patient Advocacy 66

Lessons Learned, Pitfalls and Successes 70

List of Charts & Exhibits

Bio-pharma Advocacy Is a Structured, Dynamic Process

  • Map the Advocacy Landscape to Know Where to Start
  • Find Common Ground to Build Patient Advocacy Partnerships
  • Best Approaches to Minimize Special Interest Opposition
  • Minimizing Special Interest Opposition
  • Advocacy May Create Collaboration Opportunities Among Competitors
  • Advisory Board Objectives
  • Serve Multiple Age Groups That All Suffer from Chronic Diseases
  • Forge Advocacy Coaltions to Create Unified Messages
  • Understand the Full Range of Advocacy Group Impact
  • Develop a Structured Approach for Managing Special Interest Groups
  • Avoid Reaching Out to Groups Whose Goals Do Not Align with the Company’s
  • Most Effective Education Approaches for Controversial Conditions
  • Top Collaboration Issues When Working with Socially Sensitive Diseases
  • Employ Simple Tools to Communicate Complex Ideas
  • Advocacy Groups Can Extend Their Reach through Celebrity Spokespeople
  • Unbranded Websites Offer Safe Harbor for Education in Living with a Condition
  • Hybrid Bio-pharma Advocacy Structures Are Most Common
  • A Majority Are Satisfied with Their Structure
  • Voices From the Field – Leveraging Resources
  • Connecting External Advocacy Groups with Internal Advisory Staff
  • Connecting Internal and External Advocacy Groups Is Often an Imperfect Process
  • Measuring Advocacy Effectiveness Is Informal at Most Organizations
  • Advocacy Excellence Involves Diplomacy Skills
  • Bio-pharma Advocacy Staffing Is Highly Specialized
  • Advocacy Specialists Are Experienced Both in Industry and Function
  • Communicate Performance Publically
  • Advocacy Skills Is a Part of Coporate Responsibility
  • Practice What You Preach
  • Effective Approaches to Coordinating with Patient Advocacy Groups
  • Effective Approaches for Setting Objectives with Advocacy Groups
  • Patient Advoacy Is Effective Throughout the Product Lifecycle
  • Thought Leader Programs, Patient Counseling and Provider Education Have Greatest Impact
  • Effective Approaches for Seeding Early Advocacy Relationships
  • Experiential Marketing: Overactive Bladder
  • Create Useful Tools to Engage and Educate Patients in Their Treatment
  • New Technologies Offer New Ways to Reach Patients
  • Use New Technologies and Social Media to Engage Others in the Advocacy Cause
  • Online Media Technologies Offer New Ways to Engage Patients in Treatment Management
  • Use “Opt-in” Internet Techniques to Find and Serve Unique Patient Segments
  • Effective Sponsorship Approaches for Early Stage
  • Engage Patient Advocacy Groups to Support Patient-Focuesed Therapy Development
  • Current Issues Challenging Patient Advocacy
  • Patient Advocacy Market Issues
  • Three-Year Advocacy Issues
  • Three-Year Advocacy Issues, Qualitative
  • Patient Advocacy “Painful” Lessons
  • Patient Advocacy “Painful” Lessons, Qualitative
  • Patient Advocacy Success Stories
  • Future-Facing Issues Challenging Advocacy