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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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.
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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%
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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