Advocacy Groups: Enhancing Relationships and Patient Recruitment


This report provides qualitative insight into advocacy groups’ relationships with the pharmaceutical industry. The report explores their current philosophies toward clinical trials, provides recommendations and best practices for encouraging patient participation in trials, and identifies opportunities to partner (or build on existing partnerships) with the industry.

  • The type of relationships advocacy groups desire with industry, including: involvement in clinical trial design, collaboration on patient recruitment, and role in connecting patients to industry
  • Advocacy groups’ concerns with encouraging clinical trials, including: the need to remain neutral, patient education, and trial burden on patients
  • Recommendations and best practices for delivering messages to patients and families about clinical trials
  • Uncover proven strategies to more effectively enroll patients in your rare disease/difficult-to-recruit trials
  • Learn to optimize communication strategies to ensure an “all inclusive” approach to relationship management considers all key players (advocacy groups, patients, caregivers, and investigators)
  • Develop strategies to anticipate, discuss, and mitigate advocacy group concerns and hesitations

1. Relationships with Pharma

  • Clinical Trial Design
  • Patient-Industry Relationship
  • Opportunities for Industry in Trial Design Process

2. Clinical Trial Focus

  • Clinical Trial Focus Spectrum
  • Concerns with Encouraging Clinical Trials
  • Website Focus on Clinical Trials

3. Clinical Trial Recruitment Practices

  • Clinical Trials 101 – Back to the Basics
  • Patient Registry
  • Recruitment Best Practices
  • Managing Relationships

4. Patient Advocacy Groups’ Requests of Pharma

  • Low Trial Focus Advocacy Groups
  • High Trial Focus Advocacy Groups

5. Patient Advocacy Group Profiles

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