Advocacy Groups: Enhancing Relationships and Patient Recruitment -





This report provides qualitative insight on 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.

 
What you will learn in this report
• 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

 
How you can use this report:
• 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

 
Major Sections: 
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

 
  
Methodology
In ISR’s qualitative analysis, ISR conducted 40-minute telephone interviews with senior decision-makers at 10 US-based patient advocacy groups. The individuals interviewed hold a variety of roles within their organizations, but all are in a position to speak to their organization’s philosophy on clinical trials, as well as their organization’s broader relationships with the pharmaceutical industry.
Table of Contents
Copyright and Usage Guidelines
Methodology
Roles of Interviewees
Participating Patient Advocacy Groups
Introduction
Relationships with Pharma
Clinical Trial Design
Involvement in Clinical Trial Design Spectrum
Patient-Industry Relationship
Patient-Industry Relationship Spectrum
Opportunities for Industry in Trial Design Process
Early Bird Gets the Worm
Talk to Me
Key Takeaways
Clinical Trial Focus
Clinical Trial Focus Spectrum
Concerns with Encouraging Clinical Trials
Neutrality
Patient Understanding
Patient Burden
Additional Concerns
Website Focus on Clinical Trials
Website Assessment
Key Takeaways
Clinical Trial Recruiting Practices
Clinical Trials 101 – Back to the Basics
Patient Registry
Use of Patient Registry Spectrum
Examples of Patient Registry Use
Best Practices
Delivery is Key
Keep Patients in the Loop
Help Me Help You
Put a Face to the Organization
Level With Me
Don’t Forget the Doctors
Bring It All Together
Managing Relationships
Key Takeaways
Recruiting Best Practices Summary
Advocacy Groups’ Requests of Pharma
Low Trial Focus Advocacy Groups
High Trial Focus Advocacy Groups
Patient Advocacy Group Profiles
Organization A
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization B
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization C
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization D
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization E
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization F
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization G
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization H
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization I
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
Organization J
Spectrum Summary
Relationship with Industry
Clinical Trial Focus and Recruiting Practices
About Industry Standard Research