Collaborating with Patient Advocacy Groups to Educate the Marketplace Report Summary


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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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Collaborating with Patient Advocacy Groups to Educate the Marketplace Report Summary

  1. 1. BEST PRACTICStrategic Benchmarking ResearchCollaborating with PatientAdvocacy Groups toEducate the Marketplace
  2. 2. BEST PRACTIC4. Universe of Learning: Benchmark Class Of Research Participants And TheirDemographics10. Key Insights, Findings & Observations16. Understanding the Advocacy Landscape: How to Evaluate the BroadSpectrum of Advocacy Groups and Find Common Ground with the BestAllies34. Managing Advocacy Relationships: Process Insights to Help Build LastingRelationships45. Managing Relationships with Hostile Groups: How to Find CommonGround & Avoid Making Enemies61. Advocacy Communication Practices: Effective Approaches toCommunicating & Educating Patient Advocacy Groups74. Structuring High Performance Pharma Advocacy Groups: AdvocacyStructures Are Rapidly Evolving82. Critical Competencies for Advocacy Liaisons: Community Liaisons HaveCritical Skill Sets94. Advocacy Tools: How to Use Tools to Manage Your Relationships102. New Technologies: Emerging Technologies Create New Channels &Opportunities to Educate Patient Groups107. Advocacy & Product Launch: Educating the Market Is A Critical First Step111. Current Trends & Future Directions in Patient Advocacy116. Painful Lessons Learned, Pitfalls & Successes124. About Best Practices LLCTable of Contents
  3. 3. BEST PRACTIC3Copyright © Best Practices , LLCResearch Objective and Key Topic AreasStudy Objective & MethodologyPatient and professional Advocacy Groupsare an important part of the process bywhich the marketplace is educated on newmedicines. Strong relationships withadvocacy groups are particularly vital foreducating the public on socially-sensitiveconditions and treatment options.This benchmarking study identifies effectivepractices in patient advocacy groupcollaboration and relationship management.The research also examines ideal structuresand skill sets for pharma groups that dealwith advocacy groups and emerging trendsand challenges in patient advocacy. Understanding the “advocacy”landscape Effective practices for working withpotentially hostile patient advocacygroups Advocacy structures that work best Advocacy tools Critical competencies of Advocacyprofessionals Advocacy Lessons learned from sociallysensitive or stigmatized disease areas Profiling Advocacy Group experience &expertiseKey Topic Areas ProbedThis performance benchmarking study probes best practices in working with Patient Advocacy groups, inparticular groups that deal with socially sensitive conditions. Insights are drawn from survey responsesfrom a total of 58 research participants at 43 pharmaceutical companies. More than a dozen in-depthinterviews were conducted to gather more detailed information pertinent to this study.
  4. 4. BEST PRACTICUniverse of Learning:Benchmark Class of ResearchParticipants and TheirDemographics
  5. 5. BEST PRACTIC5Copyright © Best Practices , LLCFifty-eight representatives from 43 companies shared their insights in thebenchmark 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
  6. 6. BEST PRACTIC6Copyright © Best Practices , LLCTop-50 Bio-Pharma ContributorsTwenty-eight executives from top-50 bio-pharma companies shared theirperspectives through a benchmark survey with more than a dozen executivessharing insights through in-depth interviews.
  7. 7. BEST PRACTIC7Copyright © Best Practices , LLCTotal Benchmark Class RespondentsBeyond the perspectives of executives currently serving top-50 bio-pharma companies,a variety participants from mid-cap and smaller organizations shared both current andhistorical perspectives from the experience in advocacy roles.
  8. 8. BEST PRACTIC8Copyright © Best Practices , LLCQ2: How many years of experience do you have in the pharmaceutical, biotechnology, and/ormedical device industries?n=581.09.315.015.822.038.00 10 20 30 40Min1st QuartileMedianMean3rd QuartileMaxYEARS OF EXPERIENCEBio-Pharma Research Participants Are DeeplyExperiencedExecutives and managers participating in the Advocacy field research have–on average–nearly 16 years of bio-pharmaceutical experience. The overall class reflects a pharmaindustry experience base of 772 years working with pharma and healthcare industry.
  9. 9. BEST PRACTIC9Copyright © Best Practices , LLCKey Insights, Findings & Observations SampleField research and interviews harvested many insights. Key findings, observations andeffective practices follow:Bio-pharma Advocacy Is A Structured and Dynamic Process: Advocacy services and activities should bemanaged as a structured and integrated process. Key advocacy activities follow a predictable pattern; however, the advocacyenvironment is dynamic – and the most effective advocacy programs will evolve over time to reflect the evolution of the diseasestate and lifecycle stage of a company’s product.Mapping The Advocacy Landscape To Know Where To Start: Assess the landscape of advocacy andcommunity-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 willbe 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 commonground between the commercial organization and the advocacy group. Great divides may exist. Partnerships are built on mutuallybeneficial common issues. Focus on objectives alignment, science and transparency as cornerstones of building goodrelationships in socially sensitive disease areas. Proactively reach out to activist groups to understand their perspectives. Workthrough group members who are identified as being “the most reasonable.”
  10. 10. BEST PRACTICUnderstanding theAdvocacy Landscape:How to Evaluate the BroadSpectrum of Advocacy GroupsAnd Find Common Ground WithThe Best Allies
  11. 11. BEST PRACTIC11Copyright © Best Practices , LLCBio-Pharma Advocacy Is A Structured and DynamicProcess1. UnderstandAdvocacyLandscape2. FindCommonGround4. Select Best Mixof AdvocacyServices & Support6. Learn toWork WithHostile Groups7. EvolveAdvocacy ServicesDuring DiseaseLifecycle3. Employ EffectiveCommunicationApproaches5. ManageAdvocacyRelationship& BuildTrustAdvocacyProcess“Building respectful, honest andtrusting relationships is imperative.With that as a foundation, much ispossible.”– Senior Director, Advocacy &External Affairs“You have to stay on message andyour message has to be more broadthan your bottom line. You reallyhave to see the bigger picture andnot just the market share.”– Director, Advocacy DevelopmentAdvocacy services and activities should be managed as a structured and integratedprocess. Key advocacy activities follow a predictable pattern; however, the advocacyenvironment is dynamic – and the most effective advocacy programs will evolve overtime to reflect the evolution of the disease state.
  12. 12. BEST PRACTIC12Copyright © Best Practices , LLCWhat strategy or tactics do you find most effective in minimizing opposition from PatientAdvocacy or other Special Interest Groups against a therapy that could be consideredcontroversial?Other10%Transparency13%Establishing Trust7%Alignment ofObjectives37%Focus onScience/Outcomes33%n=30“Open, honest discussion of both the intellectual andemotional sides of the issues – intellectual throughdata discussion and emotional through seeking acommon ground of understanding and, through that,developing a joint plan of action.” – VP, GlobalProfessional Affairs“Early engagement in the research and developmentstage. Get them grounded in the science andcomfortable with the larger public health benefit.”– Assistant VP, Alliance Development“They want a partnership. It is up to the company tocommunicate the therapy options and listen to thepotential opposition in a positive way; the companyneeds to understand the opposing view.” – Director,Strategic PlanningBest Approaches To Minimize Special-InterestOppositionTwo approaches – Aligning Objectives and Focusing on Science – were mentioned bymore than a third of research participants as the most effective approaches to managingopposition from special interest groups. Honesty and transparency are also criticalsuccess factors for working with patient advocacy groups.
  13. 13. BEST PRACTIC13Copyright © Best Practices , LLCRecognize Governmental & Patient Groups That Might BeCollaborators To Educate on Major New Disease Entities To leverage data showing that PAD was a predisposing factor forother cardiovascular diseases (stroke and heart attack) To raise awareness that PAD could be treated as a specific diseaseentity and get patients into treatment (for which bio-pharma companyhad a drug)ObjectiveAdvocacyTactic Forged balanced partnership with physician community and local/county public health agencies in the US Developed materials to sponsor “diagnosis days” and “screeningdays” at local clinics Worked with national health authorities and NICE in the UK to shapea national program that was run through pharmacies, and supportedby radio and TV spots to raise awarenessCostsOutput/Outcomes Raised awareness of PAD as a treatable disease and drove a hugeincrease in awareness, treatments & sales of the bio-pharmacompany’s drug in US UK surveys, in side-by-side comparisons, revealed a five-foldincrease in awareness and lagging increase in scripts Minimal budget in both cases, leveraging national/state/local funding UK pilot “supported and reinforced” by companyUnder-treated but recognized diseases may highlight public health issues. This can createfunding and collaboration opportunities for Pharma, Government and Patient AdvocacyGroups. In the case of PAD (Peripheral Arterial Disease), government funding underwrotethe creation of educational materials distributed by pharma and advocacy groups.
  14. 14. BEST PRACTIC14Copyright © Best Practices , LLCEngage Senior Leadership In Reaching Out To SignalThe Value You Accord To The Partner“The key thing here and in any approach is having senior levelinvolvement. People do not want to feel like someone’s trying to ingratiatethemselves to that particular group and they’re not a decision maker. Thatwill go off them like water on a duck’s back. . . They want to know theyhave the attention of the decision makers.”--Chief Executive Officer, BiotechEngage senior leadership in reaching out to establish initial relationship so you signalthe value you accord to the partner and avoid causing offense.
  15. 15. BEST PRACTIC15Copyright © Best Practices , LLCn=58Please rate the effectiveness of various approaches designed to help the company, therapeutic areas, andindividual brand teams coordinate relationships with patient advocacy groups.Clear Roles, Responsibilities & Relationship Owners Are Key ToEffectively Coordinating With Patient Advocacy GroupsManaging relationships with advocacy groups benefits from clarity of relationship ownership, roleand responsibility, and standardized processes. Relationship ownership receives the highest rankingwith 52% assessing it “highly effective.” Role clarity received the highest combined ranking of highlyeffective & effective.APPROACHHighlyEffectiveEffective Neutral IneffectiveHighlyIneffectiveN/ADesignate singlerelationship owners whocoordinate or controlinteractions with advocacygroups52% 26% 14% 5% 2% 2%Designate roles andresponsibilities thatauthorize individuals tointeract with advocacygroups38% 47% 9% 0% 3% 3%Set and standardizeprocesses to coordinateinteractions across groups31% 36% 22% 3% 2% 5%Other 10% 2% 2% 2% 0% 20%
  16. 16. BEST PRACTICAdvocacy & ProductLaunch:Educating the Market Is ACritical First Step
  17. 17. BEST PRACTIC17Copyright © Best Practices , LLCWhich approaches work best to deploy Advocacy grants/ sponsorships for early-stage support withadvocacy Groups?APPROACHHighlyEffectiveEffective Neutral IneffectiveHighlyIneffectiveN/AEducationProgramSupport49% 42% 2% 2% 0% 5%GeneralAwarenessSupport23% 54% 11% 7% 0% 5%General Grant 6% 22% 39% 15% 7% 11%ResearchSupport14% 39% 27% 7% 2% 11%Sponsorshipof MedicalConditionWeb Site18% 47 23 2% 0% 11Other 67% 0% 0% 33% 0% 0%n=57Education & General Awareness Support Are MostEffective Sponsorship Approaches for Early StageWith the challenges of the regulatory environment and industry skepticism, sharingscience and supporting disease education are crucial to fostering trust in suchrelationships. Companies must grow trust from where it is found.n=3Other•We arerestricted togeneral grants•Team buildingwithin theadvocacygroup-grassrootscommunitygrants•Depends onthe org as towhatinterventionsmay be themost effective.n=3
  18. 18. BEST PRACTIC18Copyright © Best Practices , LLCBest Practices, LLC6350 Quadrangle Drive, Suite 200,Chapel Hill, NC Best Practices, LLCBest Practices, LLC is a research and consulting firm that conducts work based on thesimple yet profound principle that organizations can chart a course to superioreconomic performance by studying the best business practices, operating tactics andwinning strategies of world-class companies.Link for Report: Collaborating with Patient Advocacy Groups to Educate the Marketplace