Page | 1

Collaborating with Patient Advocacy Groups to Educate the Marketplace

Best Practices, LLC Strategic Benchmarking Research & Analysis

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

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.

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:

Page | 5

High-Level Key Findings Bio-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

Page | 6

High-Level Key Findings Key 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.

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

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

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

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 networkgroups (e.g. LinkedIn)

Podcasts and otherdissemination forms

YouTube and othervideo 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

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%

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

www.best-in-class.com

Learn More About Our Company: