For pharma companies that are bringing new therapies to market, collaborating with patient advocacy groups is a critical part of educating patients and physicians. Patient advocacy groups are a trusted resource for consumers as they seek out information on new therapies, especially novel therapies. Using an online research survey and deep-dive interviews with selected participants, this research project identifies winning practices in patient advocacy group collaboration and relationship management. Study Objective – This benchmarking study identifies valuable practices in working with patient advocacy groups and managing relationships. The research also examines ideal structures and skill sets for pharma groups that deal with advocacy groups. In addition, the study shares emerging trends and challenges in patient advocacy. Throughout the study there is an emphasis on dealing with advocacy groups on treatments and conditions that carry a social stigma. Executives and managers who work with pharma groups that interact with advocacy groups can use this study to compare their approaches with those of leading companies insofar as strategies and activities regarding advocacy group interactions.

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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
Experienced
Executives 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.”

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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. Evolve
Advocacy 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?
Other
10%
Transparency
13%
Establishing Trust
7%
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
Best Approaches To Minimize Special-Interest
Opposition
Two 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.

14. BEST PRACTIC14
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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
Engage senior leadership in reaching out to establish initial relationship so you signal
the value you accord to the partner and avoid causing offense.

15. BEST PRACTIC15
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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 Groups
Managing 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 Ineffective
Highly
Ineffective
N/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%

16. BEST PRACTIC
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 Ineffective
Highly
Ineffective
N/A
Education
Program
Support
49% 42% 2% 2% 0% 5%
General
Awareness
Support
23% 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 Stage
With 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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Best Practices, LLC
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Chapel Hill, NC 27517
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About Best Practices, LLC
Best 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