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Advocacy Groups: Enhancing Relationships and Patient Recruitment

  • July 2013
  • -
  • Industry Standard Research
  • -
  • 54 pages

For the report, ISR interviewed senior decision-makers from ten prominent patient advocacy groups to provide never before seen qualitative insight into the current relationships advocacy groups have with the biopharmaceutical industry, as well as best practices for improving those relationships and activates related to clinical trial recruitment.

“Patient advocacy groups are spread across the spectrum regarding how involved they are with the development of new medicines. All respondents posit that clinical trials are the way to move forward, but for various reasons many have yet to delve into playing a role in the clinical trial process,” explained Kevin Olson, CEO of ISR. “ISR’s newest report explores these relationships, offering best practices and proven strategies to broaden partnerships, obtaining support, and where appropriate, recruit trial participants.”

ISR’s report offers “use-cases” and strategies for pharmaceutical and biotechnology organizations looking to broaden recruitment channels for difficult-to-recruit trials and/or optimize communications with advocacy groups.

What you’ll learn from ISR’s report:

• The type of relationships advocacy groups desire with industry, including: involvement in clinical trial design, collaboration on patient recruitment, and their 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

Table Of Contents

Advocacy Groups: Enhancing Relationships and Patient Recruitment
Table of Contents 2
Copyright and Usage Guidelines 4
Methodology 5
Roles of Interviewees 5
Participating Patient Advocacy Groups 6
Introduction 7
Relationships with Pharma 8
Clinical Trial Design 9
Involvement in Clinical Trial Design Spectrum 9
Patient-Industry Relationship 11
Patient-Industry Relationship Spectrum 11
Opportunities for Industry in Trial Design Process 12
Early Bird Gets the Worm 12
Talk to Me 12
Key Takeaways 13
Clinical Trial Focus 14
Clinical Trial Focus Spectrum 15
Concerns with Encouraging Clinical Trials 16
Neutrality 16
Patient Understanding 17
Patient Burden 17
Additional Concerns 18
Website Focus on Clinical Trials 19
Website Assessment 19
Key Takeaways 21
Clinical Trial Recruiting Practices 22
Clinical Trials 101 - Back to the Basics 22
Patient Registry 23
Use of Patient Registry Spectrum 23
Examples of Patient Registry Use 23
Best Practices 24
Delivery is Key 24
Keep Patients in the Loop 25
Help Me Help You 25
Put a Face to the Organization 25
Level With Me 26
Don't Forget the Doctors 26
Bring It All Together 27
Managing Relationships 28
Key Takeaways 29
Recruiting Best Practices Summary 30
Advocacy Groups' Requests of Pharma 31
Low Trial Focus Advocacy Groups 31
High Trial Focus Advocacy Groups 32
Patient Advocacy Group Profiles 34
Organization A 35
Spectrum Summary 35
Relationship with Industry 35
Clinical Trial Focus and Recruiting Practices 35
Organization B 37
Spectrum Summary 37
Relationship with Industry 37
Clinical Trial Focus and Recruiting Practices 37
Organization C 39
Spectrum Summary 39
Relationship with Industry 39
Clinical Trial Focus and Recruiting Practices 39
Organization D 41
Spectrum Summary 41
Relationship with Industry 41
Clinical Trial Focus and Recruiting Practices 41
Organization E 43
Spectrum Summary 43
Relationship with Industry 43
Clinical Trial Focus and Recruiting Practices 43
Organization F 45
Spectrum Summary 45
Relationship with Industry 45
Clinical Trial Focus and Recruiting Practices 45
Organization G 46
Spectrum Summary 46
Relationship with Industry 46
Clinical Trial Focus and Recruiting Practices 46
Organization H 48
Spectrum Summary 48
Relationship with Industry 48
Clinical Trial Focus and Recruiting Practices 48
Organization I 50
Spectrum Summary 50
Relationship with Industry 50
Clinical Trial Focus and Recruiting Practices 50
Organization J 52
Spectrum Summary 52
Relationship with Industry 52
Clinical Trial Focus and Recruiting Practices 52
About Industry Standard Research 54

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