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

Many find the United States healthcare system difficult to navigate. This challenge is only magnified for patients suffering from a serious or socially sensitive illness. For patients facing the U.S. healthcare labyrinth, advocacy groups are vital. These provide easy access to education about patients’ conditions when considering treatment options with doctors. In addition to working with patients, advocates can help to educate the family of a patient on his or her medical condition, enabling better support for the patient throughout the illness. Finally, patient advocacy services extend even into direct care administration matters, where advocates sort and monitor medical bills and manage negotiating fees with a patient’s provider or insurance company.

More broadly, patient and professional advocacy groups play a crucial role in educating the marketplace on new medicines and treatments. Collaboration between bio-pharmaceutical organizations and advocacy groups offers the opportunity for a win-win partnership: advocacy groups receive support for programs and services and the industry benefits from the market exposure and, potentially, more sales. Esteemed for their dedication to improving health and providing access to relevant information, patient advocacy groups are uniquely positioned to inform and educate consumers who typically view them as objective and trustworthy third parties. As this research will emphasize, the relationship between patients and advocacy groups assumes an especially important role with respect to socially sensitive conditions and treatment options.

This benchmarking study identifies effective practices for bio-pharmaceutical organizations seeking to better collaborate and manage

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Benchmarking Report at-a-Glance

Featured Study Participants • Abbott Labs • Amgen • Bayer • Bristol-Myers Squibb • Daiichi Sankyo • Genentech • Genzyme • GlaxoSmithKline • Johnson & Johnson • Novartis • Solvay • Takeda

Information Types • 8 Information Graphics • 21 Data Graphics • 295 Metrics • 17 Executive Narratives • 14 Best Practices Spotlights

Industry Analysis This research was based on benchmark survey data and executive interviews of 58 participants from 43 pharmaceutical, biotechnology, and medical device companies. Approximately half of the benchmark class consisted of executives representing top 50 bio-pharmaceutical companies.

Report Length 72 Pages


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.




How would you describe the structure of your company’s patient advocacy function?

n=57

5.3%

26.

19.3%

19.3%

Other: (pleasedescribe)

Hybrid

Therapeutic-Area

Centralized

Brand-oriented

Hybrid Bio-pharma Advocacy Structures Most Common

29.8%

3%

Are

“Advocacy should be centralized to allow flev

or

po

erage across the rtfolio.”

– VP, Publication Services

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

tralized structures capable of leveraging investment, learning and standards of excellence throughout the function.

fully centralized and empowered to manage relations with rands function.”

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.

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 cen

Said one director: “An optimal structure will be not related to therapeutic or brand management, but b



“So if you’re reaching out to the religious community and you’re trying to engage some of those organizations, well, abstinence is going to have to be a heavy piece of that. But you can findway of also having a broader conversation around sexual health in that context. You just have to be clear that this is how you’re going to attempt to reach that particular community with thes messages and thth

a

will wo – Assistant VP, Alliance Development

inimizing Special Interest Group Opposition (Sample Best Practice)

ositions, but strive to articulate the broader issues and

will wo – Assistant VP, Alliance Development

inimizing Special Interest Group Opposition (Sample Best Practice)

ositions, but strive to articulate the broader issues and

e is is what rk with them.”

is is what rk with them.”

MM

Respect special interest groups’ pRespect special interest groups’ papproaches to the condition/therapy.

s

issues with constituencies of different race, gender, and other traits.

but also makes them aware of broader issues and approaches.”

critical; connecting on this ground will help reduce adverse reaction from many faith-based communities.

rates fall as much as possible as quickly as possible, then you want as many people to get vaccinated as possible.”

also listed “honesty” and “transparency” as critical success factors in working with patient advocacy groups.

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 sociallyyour dialogue establish an atmosphere of compassion and respect around these

ensitive health issues and conditions, that

One vice president advised that, “For sexual health issues, there needs to be a balanced conversation with special interest groups – in particular with faith-based organizations – that recognizes and respects the group’s perspective

Bridging the kind of therapy messages that a company wants to project with what will resonate in, say, a religious community is

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

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



What strategy or tactics do you find most effective in minimizing opposition Advocacy or other Special Interest Groups against a therapy that could be

controversial?

from Patient considered

Other10%

Transparency13%

Establishing Trust7%

Alignment of Objectives

37%

Focus on Science/Outcomes

33%

n=30

“Open, honest discussion of both the emotional sides of the issues – intellectdata discussion and emotional througcommon ground of understanding and, developing a joint plan of action.” – VP,Professional Affairs

“Early engagement in the research adevelopment stage. Get them groundescience and comfortable with the largerbenefit.”– Assistant VP, Alliance Development

“They want a partnership. It is up to thcommunicate the therapy options and lipotential opposition in a positive way; tneeds to understand the opposing viDirector, Strategic Planning

intellectual and ual through

h seeking a through that, Global

nd d in the public health

e company to sten to the he company ew.” –

“Open, honest discussion of both the emotional sides of the issues – intellectudata discussion and emotional through common ground of understanding and, developing a joint plan of action.” – VP, Professional Affairs

“Early engagement in the research adevelopment stage. Get them groundedscience and comfortable with the larger pbenefit.”– Assistant VP, Alliance Development

“They want a partnership. It is up to the ccommunicate the therapy options and listpotential opposition in a positive way; thneeds to understand the opposing viDirector, Strategic Planning

Best Approaches To Minimize Special-InOpposition

intellectual and al through

seeking a through that, Global

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ompany to en to the

e company ew.” –

terest

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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SM 185A Patient Advocacy