SM 185A Patient Advocacy

Report Summary: Best Practices in Working with Patient Advocacy Groups: Building Effective Relationships

Best Practices in Working with Patient
Advocacy Groups: Building Effective
Relationships

PROJECT BACKGROUND Benchmarking Report
at-a-Glance
Many find the United States healthcare system difficult to navigate. This
challenge is only magnified for patients suffering from a serious or socially Featured Study Participants
sensitive illness. For patients facing the U.S. healthcare labyrinth, • Abbott Labs
advocacy groups are vital. These provide easy access to education about • Amgen
patients’ conditions when considering treatment options with doctors. In • Bayer
• Bristol-Myers Squibb
addition to working with patients, advocates can help to educate the family
• Daiichi Sankyo
of a patient on his or her medical condition, enabling better support for the • Genentech
patient throughout the illness. Finally, patient advocacy services extend • Genzyme
• GlaxoSmithKline
even into direct care administration matters, where advocates sort and
• Johnson & Johnson
monitor medical bills and manage negotiating fees with a patient’s • Novartis
provider or insurance company. • Solvay
• Takeda

More broadly, patient and professional advocacy groups play a crucial role
in educating the marketplace on new medicines and treatments.
Information Types
Collaboration between bio-pharmaceutical organizations and advocacy • 8 Information Graphics
• 21 Data Graphics
groups offers the opportunity for a win-win partnership: advocacy groups
• 295 Metrics
receive support for programs and services and the industry benefits from • 17 Executive Narratives
the market exposure and, potentially, more sales. • 14 Best Practices Spotlights

Esteemed for their dedication to improving health and providing access to Industry Analysis
relevant information, patient advocacy groups are uniquely positioned to This research was based on benchmark
inform and educate consumers who typically view them as objective and survey data and executive interviews of
58 participants from 43 pharmaceutical,
trustworthy third parties. As this research will emphasize, the relationship biotechnology, and medical device
between patients and advocacy groups assumes an especially important companies. Approximately half of the
role with respect to socially sensitive conditions and treatment options. benchmark class consisted of executives
representing top 50 bio-pharmaceutical
companies.
This benchmarking study identifies effective practices for bio-
pharmaceutical organizations seeking to better collaborate and manage Report Length
72 Pages
Copyright Best Practices, LLC (919) 403-0251


relationships with key patient advocacy groups. Our research also examines ideal structures and skill sets for
interacting with advocacy groups and highlights emerging trends and challenges in patient advocacy.

Key report objectives include:

• Understanding the advocacy landscape
• Identifying effective practices for working with potentially hostile patient advocacy groups
• Identifying advocacy structures that work best
• Employing advocacy tools for optimal effectiveness
• Understanding the critical competencies of advocacy professionals
• Advocacy lessons learned from socially sensitive or stigmatized disease areas
• Profiling advocacy group experience and expertise

This report features key benchmark metrics, executive insights and recommendations that can be used to map a
path to future success in working with patient advocacy groups. The report additionally provides insight into how
to work with patient advocacy groups regarding socially sensitive medical conditions.

STUDY METHODOLOGY
Best Practices, LLC employed a two-pronged approach to this research: All benchmark partners participated in a
customized quantitative survey, while selected participants contributed their qualitative thoughts, observations and
narratives in detailed interviews. This performance benchmarking study probes best practices in working with
patient advocacy groups and dealing with socially sensitive conditions.

Insights are drawn from survey responses from a total of 58 research participants at 43 pharmaceutical,
biotechnology, and medical device companies. More than a dozen in-depth interviews were conducted to gather
more detailed information pertinent to this study. Approximately half of the benchmark class (28 participants)
consisted of executives representing top 50 bio-pharmaceutical companies.

REPORT STRUCTURE AND ORGANIZATION
The project findings are organized into an executive summary, a series of topical chapters, and an appendix.
Following is a description of each section:

• Executive summary: Explains the survey methodology, identifies participating companies and reports
key findings.



• Topical chapters: Chapter topics include Understanding the Advocacy Landscape; Managing
Advocacy Relationships; Advocacy Communication Practices; Structuring High-Performance Bio-
Pharmaceutical Advocacy Groups; Critical Competencies for Advocacy Liaisons; Using Tools and
Tactics to Successfully Manage Advocacy Relationships; Current Trends and Future Directions in
Patient Advocacy; and Lessons Learned, Pitfalls and Successes.

SAMPLE FINDINGS
Among the findings that emerged from this research are the following:

• Mapping The Advocacy Landscape To Know Where To Start:

o Assess the landscape of advocacy and community interest groups to understand the broad
spectrum of players, special interests other potential sources of collaboration. Different
groups may prove more valuable collaborators at each stage of a product or disease lifecycle.
Some groups will be friendly; some groups may prove hostile. Creating a “topographical”
advocacy map is useful to strategic advocacy planning.

• Relationship Management Approaches That Work:

o Use key opinion leaders with advocacy relationships to help make introductions and provide
insights into an advocacy group’s needs and objectives. A useful relationship-building tactic is
to invite external advocacy group leaders to address a product team or franchise leadership group
to articulate the advocacy group’s priorities, goals or concerns.

• Managing Relationships With Hostile Groups: How to Avoid Making Enemies:

o Develop a structured approach to understanding, engaging and managing hostile special
interest groups. Pharmaceutical advocacy teams need dedicated staff, clear roles and
responsibilities, and field support to monitor and manage hostile groups and their activities.

• Building Infrastructures for Fast and Effective Response:

o Develop an expertise structure to support rapid response to external special interest groups
– both positive and negative – to allow immediate resolution of issues and support
intelligence gathering. Create a communications infrastructure for rapid response. Deputize
communications leaders for hostile interactions, and centralize information management and
response protocols. Stay informed through rapid global updates on hostile group activities.



• Effective Approaches To Communicating and Educating Patient Advocacy Groups:

o Employ simple tools to communicate complex ideas on the disease area to general audiences.
“New Yorker-styled” cartoons, for example, have succeeded as non-threatening communication
devices that remove the stigma from talking about treatment.

• Structuring High-Performance Pharmaceutical Advocacy Groups:

o Hybrid pharmaceutical advocacy structures are most common. Internal pharmaceutical
advocacy organizations are evenly distributed across brand-focused groups, centralized groups,
therapeutically focused groups and others with a mix of brand and therapeutic elements.

• Assessing the Best Tools To Manage Advocacy Relationships:

o Patient advocacy can be effective throughout the product lifecycle, but seems to have the
greatest effect during launch periods. Different program types have greatest impact at different
lifecycle stages. Thought leader programs, provider education, patient counseling, therapy
education, and reimbursement information at various stages all received high impact ratings from
80% or more of the research participants.

• Innovative New Technologies For Patient Education:

o Online technologies such as video, social networks, and Internet tools create new channels
and greater opportunity for internal and external advocacy groups to educate patients. Field
research and website reviews reveal that videos and other multimedia formats are seen as the most
effective new technology tools for both disease state and therapy education. Most respondents
saw value in all the tools companies commonly use to educate the public on either disorders or
therapies that carry some social stigma.

DATA SECTION EXCERPTS
Structuring High-Performance Bio-Pharmaceutical Advocacy Groups (an Excerpt)

Relationships with patient advocacy groups and professional organizations contribute to product awareness, rapid
market uptake and the continued success of the product. Consequently, companies must learn the structure,
coordination mechanisms and tactics that lead to successful, long-term relationships. However, despite progress
in this area, most companies still find it difficult to establish effective procedures that enable advocacy groups to
easily find and connect with a company’s internal advocacy team.



Different types of advocacy structures are evenly distributed among benchmark partners. Companies reported
brand-focused groups, centralized groups, therapeutically focused groups or groups with a mix of brand and
therapeutic elements. Benchmark partners suggest that this is an area for refinement and improvement.

Hybrid Bio-pharma Advocacy Structures Are
Most Common
How would you describe the structure of your company’s patient advocacy function?

Brand-oriented 19.3%

Centralized 19.3%

Therapeutic-
26.3%
Area

Hybrid 29.8%

Other: (please
5.3%
describe)

n=57

Sample Figure: Hybrid Bio-pharma Advocacy Structures Are Most Common

A majority of benchmark respondents believed their company’s current structure was suitable. At the same time,
many perceive an opportunity to improve structures. Recommendations tended to favor centralized structures
capable of leveraging investment, learning and standards of excellence throughout the function.

“Advocacy should be Said one director: “An optimal structure will be not related to therapeutic or brand
centralized to allow for management, but fully centralized and empowered to manage relations with
leverage across the
portfolio.” brands function.”
– VP, Publication Services



Minimizing Special Interest Group Opposition (Sample Best Practice)

Respect special interest groups’ positions, but strive to articulate the broader issues and
approaches to the condition/therapy.

In all advocacy interactions, dialogue should address but then aim to move beyond the strict science behind a
particular therapy. It is important, especially when addressing socially sensitive health issues and conditions, that
your dialogue establish an atmosphere of compassion and respect
“So if you’re reaching out to the
around these issues with constituencies of different race, gender, and religious community and you’re
other traits. trying to engage some of those
organizations, well, abstinence
is going to have to be a heavy
One vice president advised that, “For sexual health issues, there piece of that. But you can find a
needs to be a balanced conversation with special interest groups – in way of also having a broader
conversation around sexual
particular with faith-based organizations – that recognizes and health in that context. You just
respects the group’s perspective but also makes them aware of have to be clear that this is how
you’re going to attempt to reach
broader issues and approaches.” that particular community with
these messages and this is what
Bridging the kind of therapy messages that a company wants to will work with them.”
– Assistant VP, Alliance Development
project with what will resonate in, say, a religious community is
critical; connecting on this ground will help reduce adverse reaction from many faith-based communities.

In a Washington Post article, Merck Vice President Mark Feinberg defended the vaccine Gardasil against claims
that it sabotaged the faith-based promotion of abstinence: “It is not our intention in any way, shape, or form to
promote our vaccine as a substitute for any other prevention approach, be it abstinence or screening. If you really
want to have cervical cancer rates fall as much as possible as quickly as possible, then you want as many people to
get vaccinated as possible.”

Two specific approaches – “aligning objectives” and “focusing on science” – were cited by more than a third of
research participants as the most effective for managing opposition from special interest groups. Benchmark
partners also listed “honesty” and “transparency” as critical success factors in working with patient advocacy
groups.



Best Approaches To Minimize Special-Interest
Opposition
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?
“Open, honest discussion of both the intellectual and
“Open, honest discussion of both the intellectual and
Other
10% emotional sides of the issues ––intellectuualthrough
emotional sides of the issues intellect al through
data discussion and emotional throug seeking
data discussion and emotional throughhseeking aa
common ground of understanding and, through that,
common ground of understanding and, through that,
Alignment of Transparency
Objectives 13% developing aajoint plan of action.” ––VP, Global
developing joint plan of action.” VP, Global
37%
Professional Affairs
Professional Affairs

“Early engagement in the research aand
“Early engagement in the research nd
development stage. Get them grounde in the
development stage. Get them groundeddin the
science and comfortable with the larger ppublichealth
science and comfortable with the larger ublic health
benefit.”
benefit.”
––Assistant VP, Alliance Development
Assistant VP, Alliance Development
Focus on
Establishing Trust
7%
Science/Outcomes “They want aapartnership. ItItis up to theeccompanyto
“They want partnership. is up to th ompany to
33% communicate the therapy options and listen to the
communicate the therapy options and listen to the
potential opposition in aapositive way; thhecompany
potential opposition in positive way; t e company
needs to understand the opposing view.” ––
needs to understand the opposing view.”
Director, Strategic Planning
Director, Strategic Planning

n=30

Figure 2.4: Best Approaches to Minimize Special Interest Opposition

To forestall possible opposition from certain special interest groups, respondents recommended seeking the
moderate voice within a group – “the one person who trusts you,” as one respondent put it – and develop a
relationship from that starting point.

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TABLE OF CONTENTS
Tables and Figures.......................................................................................... …3

Executive Summary ....................................................................................... ….5
Introduction ......................................................................................................5
Research Approach .........................................................................................6
Participant Demographics................................................................................6
Report Structure and Organization ..................................................................8
Key Findings ....................................................................................................9

Understanding the Advocacy Landscape .......................................................13
Utilize tools such as advisory boards and mapping to find points of common
interest with advocacy groups ..................................................................14
Respect special interest groups’ positions, but strive to articulate the broader
issues and approaches to the condition/therapy.......................................17
For sexual health therapies, use supportive advocacy groups to educate and
publicize the impact on the patient population ..........................................19
Build coalitions that create a unified voice in the advocacy world and leverage
educational resource investments ............................................................20

Managing Advocacy Relationships .................................................................22
Meet in person with advocacy group leaders in order to establish personal
rapport and move beyond divisive issues........................................ …….22
Develop and use diverse internal advisory boards to guide the company 23
Segment populations reach patients through the most effective use of group and
peer-to-peer advocacy..............................................................................24
Managing Advocacy Relationships with Hostile Groups .........................27
Develop a structured approach for managing relationships to deal quickly and
effectively with attacks from hostile advocacy or special interest groups .27
Using Thought Leaders...............................................................................29
Make Key Opinion Leaders a resource to advocacy groups to support the
education of key target populations ..........................................................29
Transparency in Interactions Helps to Build Trust ...................................31

Advocacy Communication Practices ..............................................................34
Use science and humanity as the entry points to reach out to groups......34
Develop a rapid response team to manage advocacy issues...................34
Employ simple tools to communicate complex ideas on treatments to general
audiences .................................................................................................35

Structuring High-Performance Bio-Pharmaceutical Advocacy Groups .......39

Critical Competencies for Advocacy Liaisons ...............................................45
Communicate performance publically to affirm patient commitment ........ 48



Using Tools and Tactics to Successfully Manage Advocacy Relationships….
............................................................................................................................52
Utilize new technologies to create new channels and opportunities for educating
patient groups...........................................................................................58
Advocacy and Patient Launch ....................................................................62

Current Trends and Future Directions in Patient Advocacy .........................65

Lessons Learned, Pitfalls and Successes ......................................................69



TABLES AND FIGURES

Figure 1.1: Participating Companies................................................................................................ 6
Figure 1.2: Participant Job Titles ..................................................................................................... 7
Figure 1.3: Benchmark Partners’ Experience .................................................................................. 8
Figure 2.1: Bio-pharma Advocacy Is a Structured, Dynamic Process........................................... 13
Figure 2.2: Map the Advocacy Landscape to Know Where to Start.............................................. 14
Figure 2.3: Find Common Ground to Build Patient Advocacy Partnerships................................. 16
Figure 2.4: Best Approaches to Minimize Special Interest Opposition......................................... 18
Figure 2.5: Minimizing Special Interest Opposition...................................................................... 19
Figure 2.6: Advocacy May Create Collaboration Opportunities Among Competitors.................. 20
Figure 3.1: Advisory Board Objectives ......................................................................................... 24
Figure 3.2: Serve Multiple Age Groups That All Suffer from Chronic Diseases .......................... 25
Figure 3.3: Forge Advocacy Coaltions to Create Unified Messages ............................................. 26
Figure 3.4: Understand the Full Range of Advocacy Group Impact ............................................. 27
Figure 3.5: Develop a Structured Approach for Managing Special Interest Groups ..................... 28
Figure 3.6: Avoid Reaching Out to Groups Whose Goals Do Not Align with the Company’s..... 30
Figure 3.7: Most Effective Education Approaches for Controversial Conditions ......................... 32
Figure 3.8: Top Collaboration Issues When Working with Socially Sensitive Diseases............... 33
Figure 4.1: Employ Simple Tools to Communicate Complex Ideas ............................................. 36
Figure 4.2: Advocacy Groups Can Extend Their Reach through Celebrity Spokespeople ........... 37
Figure 4.3: Unbranded Websites Offer Safe Harbor for Education in Living with a Condition ... 38
Figure 5.1: Hybrid Bio-pharma Advocacy Structures Are Most Common ................................... 39
Figure 5.2: A Majority Are Satisfied with Their Structure............................................................ 40
Figure 5.3: Voices From the Field – Leveraging Resources.......................................................... 41
Figure 5.4: Connecting External Advocacy Groups with Internal Advisory Staff ........................ 42
Figure 5.5: Connecting Internal and External Advocacy Groups Is Often an Imperfect
Process……………………………………………………………………………………………43
Figure 5.6: Measuring Advocacy Effectiveness Is Informal at Most Organizations ..................... 44
Figure 6.1: Advocacy Excellence Involves Diplomacy Skills....................................................... 45



Figure 6.2: Bio-pharma Advocacy Staffing Is Highly Specialized................................................ 47
Figure 6.3: Advocacy Specialists Are Experienced Both in Industry and Function...................... 48
Figure 6.4: Communicate Performance Publically ........................................................................ 49
Figure 6.5: Advocacy Skills Is a Part of Coporate Responsibility................................................. 50
Figure 6.6: Practice What You Preach........................................................................................... 51
Figure 7.1: Effective Approaches to Coordinating with Patient Advocacy Groups ...................... 52
Figure 7.2: Effective Approaches for Setting Objectives with Advocacy Groups ........................ 53
Figure 7.3: Patient Advoacy Is Effective Throughout the Product Lifecycle ................................ 54
Figure 7.4: Thought Leader Programs, Patient Counseling and Provider Education Have Greatest Impact
....................................................................................................................................................... 55
Figure 7.5: Effective Approaches for Seeding Early Advocacy Relationships ............................. 56
Figure 7.6: Experiential Marketing: Overactive Bladder............................................................... 57
Figure 7.7: Create Useful Tools to Engage and Educate Patients in Their Treatment .................. 58
Figure 7.8: New Technologies Offer New Ways to Reach Patients .............................................. 59
Figure 7.9: Use New Technologies and Social Media to Engage Others in the Advocacy Cause…..
....................................................................................................................................................... 60
Figure 7.10: Online Media Technologies Offer New Ways to Engage Patients in Treatment Management
....................................................................................................................................................... 61
Figure 7.11: Use “Opt-in” Internet Techniques to Find and Serve Unique Patient Segments....... 62
Figure 7.12: Effective Sponsorship Approaches for Early Stage .................................................. 63
Figure 7.13: Engage Patient Advocacy Groups to Support Patient-Focuesed Therapy Development
....................................................................................................................................................... 64
Figure 8.1: Current Issues Challenging Patient Advocacy ............................................................ 65
Figure 8.2: Patient Advocacy Market Issues ................................................................................. 66
Figure 8.3: Three-Year Advocacy Issues....................................................................................... 67
Figure 8.4: Three-Year Advocacy Issues, Qualitative ................................................................... 68
Figure 9.1: Patient Advocacy “Painful” Lessons........................................................................... 69
Figure 9.2: Patient Advocacy “Painful” Lessons, Qualitative ....................................................... 70
Figure 9.3: Patient Advocacy Success Stories ............................................................................... 71
Figure 9.4: Future-Facing Issues Challenging Advocacy .............................................................. 72



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