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Best Practices in Patient Advocacy Groups Collaboration and Relationship Management to Educate Market


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The current structure of medical education emphasizes pedagogy related to the physician-patient relationship, and thus advocacy opportunities at this level. Patient and professional Advocacy Groups are important to the process of educating the marketplace on new therapies. Strong relationships with advocacy groups are important for educating the public on socially-sensitive conditions and treatment options.

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

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Best Practices in Patient Advocacy Groups Collaboration and Relationship Management to Educate Market

  1. 1. Page | 1 Collaborating with Patient Advocacy Groups to Educate the Marketplace Best Practices, LLC Strategic Benchmarking Research & Analysis
  2. 2. Page | 2 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. 24-28  Managing Relationships Within Controversial Disease States pgs. 29-37  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
  3. 3. Page | 3 Patient Advocacy Benchmark Research: Objectives, Methodology & Topics Collaborating with Patient Advocacy groups can be critical to educating the public and successfully bringing new medical products to market. This study examines winning strategies, best practices, preferred structures, responsibilities, collaboration approaches, resource levels, and emerging trends in Patient Advocacy. Topics Covered Research Methodology Research Overview  Understanding the “advocacy” landscape  Effective practices for working with potentially hostile patient advocacy groups  Advocacy structures that work best  Advocacy tools  Critical competencies of Advocacy professionals  Advocacy Lessons learned from socially sensitive or stigmatized disease areas  Profiling Advocacy Group experience & expertise Best Practices, LLC engaged 24 leaders from 21 top biopharmaceutical companies through a benchmarking survey. In-depth interviews were conducted to gather more detailed information pertinent to this study.  Patient and professional Advocacy Groups are an important part of the process of educating the marketplace on new therapies. Strong relationships with advocacy groups are particularly vital for educating the public on socially-sensitive conditions and treatment options.  This study identifies effective practices in patient advocacy group collaboration and relationship management. The research also examines ideal structures and skill sets for pharma groups that deal with advocacy groups and emerging trends and challenges in patient advocacy.
  4. 4. Page | 4 Universe of Learning: 21 Companies Contributed to This Research This study engaged 24 leaders supporting patient advocacy at 21 leading life sciences companies. More than 50% of participants are at the director/ senior director level. More than 70% of participants are from the United States. Benchmark Class:
  5. 5. Page | 5 High-Level Key FindingsBio-Pharma Advocacy is a Structured and Dynamic Process Advocacy services and activities should be managed in a structured and integrated process. Key advocacy activities follow a predictable pattern; however, the advocacy environment is dynamic – and the most effective advocacy programs will evolve over time. Understand Advocacy Landscape Employ Effective Communication Approaches Select Best Mix of Advocacy Services/Support Manage Advocacy Relationship & Build Trust Learn to Work With Hostile Groups Evolve Advocacy Services During Disease Lifecycle Find Common Ground
  6. 6. Page | 6 High-Level Key FindingsKey Recommendations Be Transparent and Respect Patient Advocacy Group's View Use transparency as the cornerstone of building lasting relationships. Patient Advocacy Groups are disease state experts; be respectful of their views. Exchange information regularly and communicate to maintain relations. Use Patient Advocacy Especially During Pre-launch & Launch While patient advocacy is effective throughout the product lifecycle, it is most effective during launch and pre-launch. Seed early relationships to increase effectiveness of patient advocacy programs. Adhere To Ethical Boundaries Proactively reach out to activist groups to understand their perspectives. Adhere to industry or Patient Advocacy codes and ethics. Use diplomacy to collaborate with religious and special interest groups. Develop a structured approach to understanding, engaging and supporting hostile special interest groups. Identify Shared Goals & Use as Foundation for Relationships Find common ground to build patient advocacy partnerships. Develop an advocacy approach that spots common ground between the commercial organization and the advocacy group. While great divides may exist, partnerships are built on mutually beneficial issues.
  7. 7. Key Findings & Insights Few of the key findings and insights that emerged from this study:  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.  New Technologies For Patient Education: Video, social networks and internet tools all create new channels and opportunities for internal and external advocacy groups to educate patients. Field research reveals that social networking groups and videos are seen as the most effective technology tools for both disease and therapy education. Most respondents saw some value in all the different tools used to educate the public on either disorders or therapies that carry some social stigma. Page | 7
  8. 8. Page | 8 5) How would you describe the structure of your company’s patient advocacy function? N=24 Structure: There is no one-size-fits-all approach to structure for pharma patient advocacy groups. Thirty-eight percent of participants have a decentralized with therapeutic area focus, while 17% have a hybrid structure. Nearly 40% of companies centralize their patient advocacy organization. Organizational Structures Vary for Advocacy Groups within Pharma % respondents Centralized , 38% Decentralized with Therapeutic- Area focus , 38% Hybrid, 17% Other, 7%* *Others: • Therapeutic area focus, research unit and business unit advocacy interaction • In regional level, no dedicated person in charge “At a national level, each person is focused on a disease state. For instance, with infectious disease that means one person handles hepatitis, TB and HIV. As we move into other infectious diseases, we will looking at those and then have someone who is focused on immunology. Then, we have someone focused on oncology; we have somebody focused on mental health and somebody who is focused on cardiovascular. So each one of us is focused on a particular therapeutic area. Now on a regional side some of them cross over and handle multiple disease states.” -- Advocacy Director
  9. 9. Page | 9 17) What considerations are most critical when managing collaboration with an advocacy group regarding therapies that may trigger controversy or social stigma? N=16 Critical Considerations In Social Stigma Therapies: Three issue areas – aligning objectives, building trust, and being transparent – emerged as the top considerations when successfully collaborating with advocacy groups regarding potentially controversial therapies. Aligning Patient Needs is Top Collaboration Issue Companies Face When Working with Socially Sensitive Diseases % respondents Aligning Patient Needs & Objectives, 50% Transparency, 19% Establishing Trust, 19% Sensitivity Of Topic, 6% Others, 6% *Others: Social Media * “In terms of being open and transparent, it’s like when we need help from them we can go to them, and when they need help from us they can come to us.” -- National Policy & Advocacy Director
  10. 10. Page | 10 23) Please rate the importance of the following platforms in delivering education to patient groups. N=21 Platforms Used: The perceived importance of social media as an education platform has increased in the last few years. In this study, 71% of participants rated social network groups like Facebook as important whereas 69% held the same view in a 2012 study*. Likewise, 66% rated YouTube and other video sites as important, whereas 52% rated them as important in the earlier study. Use of Social Media & YouTube in Patient Education is Increasing % respondents 5%10% 29%29% 19% 33% 37%42% 33% 14% 10% 5%10% 38%33% 24%29% Professional network groups (e.g. LinkedIn) Podcasts and other dissemination forms YouTube and other video sites Social network groups (e.g. Face Book) Highly Important Important Unimportant Highly Unimportant N/A Others: • Twitter, viral communication threads, information exchange • Face to face interactions • Educational face-to-face group meetings *Source: PSM-242 Collaborating with Patient Advocacy Groups to Educate the Marketplace
  11. 11. Page | 11 1) Please provide the following information, which will be utilized for classification purposes and to ensure that you receive a copy of the study deliverable: N=24 Participant’s Job Title This research features insights from a range of leaders in patient advocacy functions. More than half of respondents serve as a director, while around 25% of participants are manager of patient advocacy function at their organizations. Universe of Learning: Majority of Participants at Director Level % respondents C-Suite/ VPs, 8% Director, 54% Manager, 25% Others, 13%
  12. 12. Page | 12 Best Practices®, LLC is an internationally recognized thought leader in the field of best practice benchmarking®. We are a research, consulting, benchmark database, publishing and advisory firm that conducts work based on the simple yet profound principle that organizations can chart a course to superior economic performance by leveraging the best business practices, operating tactics and winning strategies of world-class companies. 6350 Quadrangle Drive, Suite 200 Chapel Hill, NC 27517 (Phone): 919-403-0251 Learn More About Our Company: