This document summarizes a study examining best practices for collaborating with patient advocacy groups. It provides an overview of the research methodology, participating companies, key findings and insights. Some of the main findings include: 1) there is no single best structure for patient advocacy groups, with companies taking decentralized, centralized and hybrid approaches; 2) social media and video platforms are increasingly important in patient education; and 3) transparency, aligning objectives, and trust are critical when working with advocacy groups on controversial therapies.

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Collaborating with Patient Advocacy Groups
to Educate the Marketplace
Best Practices, LLC Strategic Benchmarking Research & Analysis

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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

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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.

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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:

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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

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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. 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.
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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

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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

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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

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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%

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