1<!DOCTYPE html>

Products & Services Patient Focused Services Patient Advocacy Groups

Collaborating with Patient Advocacy Groups to Educate the Marketplace

ID: PSM-330


21 Info Graphics

23 Data Graphics

270+ Metrics

30 Narratives

24 Best Practices

Pages: 79

Published: Pre-2019

Delivery Format: Shipped


License Options:

Buy Now



Patient and Professional Advocacy Groups are an important part of the process by which the marketplace is educated on new medicines and treatments. Developing robust relationships with advocacy groups are particularly vital for educating the public on socially-sensitive conditions and treatment options. Consequently, biopharmaceutical organizations seek better ways to collaborate and manage relationships with key patient and professional advocacy groups.

Best Practices, LLC undertook this study to identify effective practices in patient advocacy group collaboration and relationship management. This study also examines the ideal structures and skill sets for pharma groups that deal with advocacy groups and emerging trends and challenges in patient advocacy.

Industries Profiled:
Biopharmaceutical; Pharmaceutical; Medical; Manufacturing; Biotech; Consumer Products; Diagnostic; Medical Device; Research; Health Care

Companies Profiled:
Alnylam Pharmaceuticals; Astellas; Baldwin Area Medical Center; Bayer; Boehringer Ingelheim; Covance; Forum Pharmaceuticals; Genzyme; Horizon Pharma; Johnson & Johnson; Lundbeck; Mallinckrodt; Natera; Novartis; Parkway Pantai; Pfizer; Pharmacyclics; Spark Therapeutics; Teva Pharmaceutical Industries Ltd; UCB Pharma; Zogenix

Study Snapshot

Best Practices, LLC engaged 24 leaders supporting patient advocacy at 21 leading life sciences companies through a benchmarking survey. In-depth interviews were conducted to gather further insights pertinent to this study. More than 50% of participants are at the director/senior director level. More than 70% of participants are from the United States.

Key Findings

Structuring High Performance Bio-Pharma Advocacy Groups: Companies participating in this study did not favor one type of organizational structure for their patient advocacy groups. The structural approach of participants’ advocacy organizations ranged between decentralized therapeutic area - focused groups, centralized groups and those with a hybrid structure. More than half of the companies consider their advocacy group structure effective. More than half of the companies who consider their structure effective use a centralized approach. Moreover, of the 11 companies that consider their structure ineffective, 45% would like to adopt a centralized structure to improve their operations.

An Increasing Number of Patient Advocacy Groups are Involved in Clinical Trials: There are several factors that are considered important from the patient advocacy perspective - one such factor is increasing patient empowerment. Patient advocacy groups have taken a more active role in clinical trials – including funding, recruitment and design. Keeping this trend in mind, companies should find common ground between commercial and advocacy groups to build mutually beneficial relationships.

Table of Contents

Executive Summary, pgs. 3-10
Research Overview, pg. 3
Participating Companies, pg. 4
Bio-pharma Advocacy Process, pg. 5
Key Recommendations, pg. 6
Key Findings & Insights, pgs. 7-10
Patient Advocacy Functional Structure, pgs. 11-19
Patient Advocacy Partner Coordination & Effectiveness, pgs. 20-23
Developing & Optimizing Patient Advocacy Partnerships, pgs. 29-37
Managing Relationships Within Controversial Disease States, pgs. 35-43
Current Trends & Future Directions, pgs. 38-42
Impact Regulatory On Patient Advocacy, pgs. 43-49
Use Of Technology, Future Trends & Issues, pgs. 50-54
Ethics And Patient Advocacy Relations, pgs. 55-58
Lessons Learned, pgs. 59-67
Appendix, pgs. 68-73
Benchmark Class Demographics, pgs. 74-77
About Best Practices, LLC, pgs. 78-79

List of Charts & Exhibits

Structure of Patient Advocacy Function
Efficacy of Current Structure
Optimal Structure for an Internal Patient Advocacy Group
Communication with Advocacy Groups
Formal & Informal Communication Process
Number of FTEs Dedicated to Patient Advocacy Activities
Number of Advocacy Groups Supported by Participating Organizations
Effective Metrics for Measuring the Success of Patient Advocacy Activities and Relationships
Effective Approaches Used to Build Advocacy Group Relationships
Effectiveness of Methods for Prioritizing Objectives when an Advocacy Group Maintains Relationships with Multiple Brands or Therapeutic Areas
Importance of Advocacy Collaborations at Different Lifecycle Stages
Education, Support Programs, and Grants/Sponsorships Used During Key Lifecycle Stages
Best Approaches to Seed an Early Relationship with Patient Advocacy Groups
Strategies to deploy Advocacy Grants/Sponsorships for Early-stage Support with Advocacy Groups
Critical Considerations In Therapies that May Trigger Controversy or Social Stigma
Effective Approaches in Educating the Market on Conditions that May be Highly Controversial or Have a Social Stigma
Impact of Special Interest Groups
Most Effective Strategy or Tactics in Minimizing Opposition from Patient Advocacy or Other Special Interest Groups against a Therapy that could be Considered Controversial
3 Pillars for Success
Current Issues Surrounding Patient Advocacy
Funding of Clinical Trial Studies by Advocacy Groups
Impact Of New Regulations on Patient Advocacy Strategies and Tactics to Address Them
Impact of Patient Involvement in Government Regulatory Agencies, Including the FDA and the Prescription Drug User Fee Act on Patient Advocacy Groups
Platforms Used to Deliver Education to Patient Groups
Future Opportunities & Issues Anticipated for Patient Advocacy Groups over the Next 36 Months
Characteristics Of Patient Advocacy
Ethical Boundaries Adhered to While Working with Patient Advocacy Groups
Dos & Don’ts
Lessons Learned While Working with Patient Advocacy Groups
Top Success Stories about Relationships with Patient Advocacy Groups