collaborating with patient advocacy groups to educate the marketplace report summary

BEST PRACTICES,®

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Strategic Benchmarking Research

Collaborating with Patient Advocacy Groups to Educate

the Marketplace

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4. Universe of Learning: Benchmark Class Of Research Participants And Their Demographics

10. Key Insights, Findings & Observations

16. Understanding the Advocacy Landscape: How to Evaluate the Broad Spectrum of Advocacy Groups and Find Common Ground with the Best Allies

34. Managing Advocacy Relationships: Process Insights to Help Build Lasting Relationships

45. Managing Relationships with Hostile Groups: How to Find Common Ground & Avoid Making Enemies

61. Advocacy Communication Practices: Effective Approaches to Communicating & Educating Patient Advocacy Groups

74. Structuring High Performance Pharma Advocacy Groups: Advocacy Structures Are Rapidly Evolving

82. Critical Competencies for Advocacy Liaisons: Community Liaisons Have Critical Skill Sets

94. Advocacy Tools: How to Use Tools to Manage Your Relationships

102. New Technologies: Emerging Technologies Create New Channels & Opportunities to Educate Patient Groups

107. Advocacy & Product Launch: Educating the Market Is A Critical First Step

111. Current Trends & Future Directions in Patient Advocacy

116. Painful Lessons Learned, Pitfalls & Successes

124. About Best Practices LLC

Table of Contents

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Copyright © Best Practices, LLC

Research Objective and Key Topic Areas

Study Objective & Methodology

Patient and professional Advocacy Groups

are an important part of the process by

which the marketplace is educated on new

medicines. Strong relationships with

advocacy groups are particularly vital for

educating the public on socially-sensitive

conditions and treatment options.

This benchmarking 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.

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

Key Topic Areas Probed

This performance benchmarking study probes best practices in working with Patient Advocacy groups, in particular groups that deal with socially sensitive conditions. Insights are drawn from survey responses from a total of 58 research participants at 43 pharmaceutical companies. More than a dozen in-depth interviews were conducted to gather more detailed information pertinent to this study.

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Universe of Learning:

Benchmark Class of Research Participants and Their

Demographics

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Fifty-eight representatives from 43 companies shared their insights in the benchmark survey and more than a dozen agreed to interviews. Approximately half of the class represented top-50 bio-pharma companies.

Universe of Learning & Insights

Abaxis Eisai Savient Pharmaceuticals

Abbott Laboratories Genentech Solvay

Allos Therapeutics Genzyme Synapse Biomedical

Amgen GlaxoSmithKline Takeda

Anesiva IDS Canada Talecris

ANS Infosys BPO Teva

Astellas Johnson & Johnson Theratechnologies

Baxter King Pharmaceuticals Thoratec Corporation

Bayer MEDRAD Tibotec

Becton Dickinson Novartis Triple-S, Inc.

Boston Scientific Nupathe United Therapeutics

Bristol Myers Squibb Ocimum Biosolutions Vital Therapies, Inc.

Covidien Onyx Pharmaceuticals Wyeth

Daiichi Sankyo Philips Home Healthcare

Discovery Chicago Purdue Pharma

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Top-50 Bio-Pharma Contributors

Twenty-eight executives from top-50 bio-pharma companies shared their perspectives through a benchmark survey with more than a dozen executives sharing insights through in-depth interviews.

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Total Benchmark Class Respondents

Beyond the perspectives of executives currently serving top-50 bio-pharma companies, a variety participants from mid-cap and smaller organizations shared both current and historical perspectives from the experience in advocacy roles.

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Q2: How many years of experience do you have in the pharmaceutical, biotechnology, and/or medical device industries?

n=58

1.0

9.3

15.0

15.8

22.0

38.0

0 10 20 30 40

Min

1st Quartile

Median

Mean

3rd Quartile

Max

YEARS OF EXPERIENCE

Bio-Pharma Research Participants Are Deeply ExperiencedExecutives and managers participating in the Advocacy field research have–on average–nearly 16 years of bio-pharmaceutical experience. The overall class reflects a pharma industry experience base of 772 years working with pharma and healthcare industry.

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Key Insights, Findings & Observations Sample

Field research and interviews harvested many insights. Key findings, observations and effective practices follow:

Bio-pharma Advocacy Is A Structured and Dynamic Process: Advocacy services and activities should be managed as 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 to reflect the evolution of the disease state and lifecycle stage of a company’s product.

Mapping The Advocacy Landscape To Know Where To Start: Assess the landscape of advocacy and community-interest groups to understand the broad spectrum of players, special interests and possible collaborators. Different groups may prove more valuable collaborators at different stages of the product and disease lifecycle. Some groups will be friendly; some groups may prove hostile. Creating an advocacy “topographical” map is useful to strategic advocacy planning.

Finding Common Ground: How to Assess Advocacy Groups to Identify Points of Shared Interest: Find common ground to build patient advocacy partnerships. Develop an advocacy approach that sets out to spot common ground between the commercial organization and the advocacy group. Great divides may exist. Partnerships are built on mutually beneficial common issues. Focus on objectives alignment, science and transparency as cornerstones of building good relationships in socially sensitive disease areas. Proactively reach out to activist groups to understand their perspectives. Work through group members who are identified as being “the most reasonable.”

Bio-pharma Advocacy Is A Structured and Dynamic Process: Advocacy services and activities should be managed as 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 to reflect the evolution of the disease state and lifecycle stage of a company’s product.

Mapping The Advocacy Landscape To Know Where To Start: Assess the landscape of advocacy and community-interest groups to understand the broad spectrum of players, special interests and possible collaborators. Different groups may prove more valuable collaborators at different stages of the product and disease lifecycle. Some groups will be friendly; some groups may prove hostile. Creating an advocacy “topographical” map is useful to strategic advocacy planning.

Finding Common Ground: How to Assess Advocacy Groups to Identify Points of Shared Interest: Find common ground to build patient advocacy partnerships. Develop an advocacy approach that sets out to spot common ground between the commercial organization and the advocacy group. Great divides may exist. Partnerships are built on mutually beneficial common issues. Focus on objectives alignment, science and transparency as cornerstones of building good relationships in socially sensitive disease areas. Proactively reach out to activist groups to understand their perspectives. Work through group members who are identified as being “the most reasonable.”

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Understanding the Advocacy Landscape:

How to Evaluate the Broad Spectrum of Advocacy Groups

And Find Common Ground With The Best Allies

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Bio-Pharma Advocacy Is A Structured and Dynamic Process

1. Understand Advocacy Landscape

2. Find Common Ground

4. Select Best Mix of Advocacy

Services & Support

6. Learn to Work With

Hostile Groups

7. EvolveAdvocacy Services During Disease Lifecycle

3. Employ Effective Communication Approaches

5. Manage Advocacy Relationship & Build Trust

Advocacy Process

“Building respectful, honest and trusting relationships is imperative. With that as a foundation, much is possible.”

– Senior Director, Advocacy & External Affairs

“You have to stay on message and your message has to be more broad than your bottom line. You really have to see the bigger picture and not just the market share.”

– Director, Advocacy Development

Advocacy services and activities should be managed as 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 to reflect the evolution of the disease state.

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What strategy or tactics do you find most effective in minimizing opposition from Patient Advocacy or other Special Interest Groups against a therapy that could be considered controversial?

Other10%

Transparency13%

Establishing Trust7%

Alignment of Objectives

37%

Focus on Science/Outcomes

33%

n=30

“Open, honest discussion of both the intellectual and emotional sides of the issues – intellectual through data discussion and emotional through seeking a common ground of understanding and, through that, developing a joint plan of action.” – VP, Global Professional Affairs

“Early engagement in the research and development stage. Get them grounded in the science and comfortable with the larger public health benefit.” – Assistant VP, Alliance Development

“They want a partnership. It is up to the company to communicate the therapy options and listen to the potential opposition in a positive way; the company needs to understand the opposing view.” – Director, Strategic Planning

“Open, honest discussion of both the intellectual and emotional sides of the issues – intellectual through data discussion and emotional through seeking a common ground of understanding and, through that, developing a joint plan of action.” – VP, Global Professional Affairs

“Early engagement in the research and development stage. Get them grounded in the science and comfortable with the larger public health benefit.” – Assistant VP, Alliance Development

“They want a partnership. It is up to the company to communicate the therapy options and listen to the potential opposition in a positive way; the company needs to understand the opposing view.” – Director, Strategic Planning

Best Approaches To Minimize Special-Interest OppositionTwo approaches – Aligning Objectives and Focusing on Science – were mentioned by more than a third of research participants as the most effective approaches to managing opposition from special interest groups. Honesty and transparency are also critical success factors for working with patient advocacy groups.

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Recognize Governmental & Patient Groups That Might Be Collaborators To Educate on Major New Disease Entities

To leverage data showing that PAD was a predisposing factor for other cardiovascular diseases (stroke and heart attack)

To raise awareness that PAD could be treated as a specific disease entity and get patients into treatment (for which bio-pharma company had a drug)

Objective

Advocacy Tactic

Forged balanced partnership with physician community and local/ county public health agencies in the US

Developed materials to sponsor “diagnosis days” and “screening days” at local clinics

Worked with national health authorities and NICE in the UK to shape a national program that was run through pharmacies, and supported by radio and TV spots to raise awareness

Costs

Output/ Outcomes

Raised awareness of PAD as a treatable disease and drove a huge increase in awareness, treatments & sales of the bio-pharma company’s drug in US

UK surveys, in side-by-side comparisons, revealed a five-fold increase in awareness and lagging increase in scripts

Minimal budget in both cases, leveraging national/state/local funding UK pilot “supported and reinforced” by company

Under-treated but recognized diseases may highlight public health issues. This can create funding and collaboration opportunities for Pharma, Government and Patient Advocacy Groups. In the case of PAD (Peripheral Arterial Disease), government funding underwrote the creation of educational materials distributed by pharma and advocacy groups.

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Engage Senior Leadership In Reaching Out To Signal The Value You Accord To The Partner

“The key thing here and in any approach is having senior level involvement. People do not want to feel like someone’s trying to ingratiate themselves to that particular group and they’re not a decision maker. That will go off them like water on a duck’s back. . . They want to know they have the attention of the decision makers.”

--Chief Executive Officer, Biotech

“The key thing here and in any approach is having senior level involvement. People do not want to feel like someone’s trying to ingratiate themselves to that particular group and they’re not a decision maker. That will go off them like water on a duck’s back. . . They want to know they have the attention of the decision makers.”

--Chief Executive Officer, Biotech

Engage senior leadership in reaching out to establish initial relationship so you signal the value you accord to the partner and avoid causing offense.

http://www.gsk.com/community/filariasis/carter-center.htm

http://www.gsk.com/community/filariasis/carter-center.htm

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n=58

Please rate the effectiveness of various approaches designed to help the company, therapeutic areas, and individual brand teams coordinate relationships with patient advocacy groups.

Clear Roles, Responsibilities & Relationship Owners Are Key To Effectively Coordinating With Patient Advocacy GroupsManaging relationships with advocacy groups benefits from clarity of relationship ownership, role and responsibility, and standardized processes. Relationship ownership receives the highest ranking with 52% assessing it “highly effective.” Role clarity received the highest combined ranking of highly effective & effective.

APPROACH Highly Effective

Effective Neutral IneffectiveHighly

IneffectiveN/A

Designate single relationship owners who coordinate or control interactions with advocacy groups

52% 26% 14% 5% 2% 2%

Designate roles and responsibilities that authorize individuals to interact with advocacy groups

38% 47% 9% 0% 3% 3%

Set and standardize processes to coordinate interactions across groups

31% 36% 22% 3% 2% 5%

Other 10% 2% 2% 2% 0% 20%

http://www.best-in-class.com/bestp/domrep.nsf/products/best-practices-in-designing-effective-brand-teams-brand-governance-and-brand-team-management!OpenDocument

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Advocacy & Product Launch:

Educating the Market Is A Critical First Step

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Which approaches work best to deploy Advocacy grants/ sponsorships for early-stage support with advocacy Groups?

APPROACH Highly Effective

Effective Neutral IneffectiveHighly

IneffectiveN/A

Education Program Support

49% 42% 2% 2% 0% 5%

General Awareness

Support23% 54% 11% 7% 0% 5%

General Grant 6% 22% 39% 15% 7% 11%

Research Support 14% 39% 27% 7% 2% 11%

Sponsorship of Medical Condition Web Site

18% 47 23 2% 0% 11

Other 67% 0% 0% 33% 0% 0%

n=57

Education & General Awareness Support Are Most Effective Sponsorship Approaches for Early StageWith the challenges of the regulatory environment and industry skepticism, sharing science and supporting disease education are crucial to fostering trust in such relationships. Companies must grow trust from where it is found.

n=3

Other• We are

restricted to general grants

• Team building within the advocacy group-

grassroots community grants• Depends on

the org as to what interventions may be the most effective.

n=3

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About Best Practices, LLCBest Practices, LLC is a research and consulting firm that conducts work based on the simple yet profound principle that organizations can chart a course to superior economic performance by studying the best business practices, operating tactics and winning strategies of world-class companies.

Link for Report: Collaborating with Patient Advocacy Groups to Educate the Marketplace

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collaborating with patient advocacy groups to educate the marketplace report summary

Health & Medicine

advocacy relationships

advocacy liaisons

advocacy landscape

dealwith advocacy groups

patient advocacy groups74

advocacy product launch

pharma groups

hostile groups