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» Products & Services » » Patient Focused Services » Patient Advocacy Groups

Patient Advocacy Internal Collaboration to Raise Awareness, Guide Research, and Improve Access

ID: PSM-370


Features:

15 Info Graphics

28 Data Graphics

300+ Metrics

29 Narratives


Pages: 51


Published: 2020


Delivery Format: Shipped


 

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919-403-0251

  • STUDY OVERVIEW
  • BENCHMARK CLASS
  • STUDY SNAPSHOT
  • KEY FINDINGS
  • VIEW TOC AND LIST OF EXHIBITS
Top companies are laser-focused on maximizing the impact of their patient-centric programs, chief among which are often patient advocacy initiatives.


While the Advocacy Teams with many biopharma organizations often lead or support these efforts, numerous challenges around internal coordination can undermine a company's effectiveness in delivering high, consistent value in the patient sphere.

Best Practices, LLC undertook this benchmarking research to investigate the ideal role that Patient Advocacy teams can play in internal coordination, critical influence points, and shared decision making. This report examines how biopharma companies’ Advocacy Teams work to improve coordination efforts with internal groups such as Marketing, Medical Affairs, R&D, and Government Affairs.

Our report also delivers benchmarks and insights around the mechanics of partnerships with patient advocacy groups, R&D partnerships with advocacy groups, and improving disease awareness through patient advocacy partnerships. This report will help companies form a shared road map to allow Advocacy Team leaders to fulfill patient-centric objectives and better serve external patient advocacy groups.


Industries Profiled:
Pharmaceutical; Biotech; Communications; Biopharmaceutical; Manufacturing; Consumer Products; Diagnostic; Medical Device; Chemical; Health Care


Companies Profiled:
AbbVie; Alexion Pharmaceuticals; Amicus Therapeutics; ApotheCom; Arena Pharmaceuticals; Astellas; Bayer; Bluebird Bio; Boehringer Ingelheim; Clovis Oncology; Dermira; Eli Lilly; Forma Therapeutics; Galapagos; Genentech; Horizon Therapeutics; Ipsen; Johnson & Johnson; Kiniska Pharmaceuticals; Merck KGaA; Milestone Pharmaceuticals; Myovant Sciences; NexGen Healthcare Communications; Novartis; Novo Nordisk; Orchard Therapeutics; Orion Pharmaceuticals; OTSUKA; Reata Pharmaceuticals; Roche; Sangamo Therapeutics; Spark Therapeutics; Sunovion; Syneos Health; Takeda Pharmaceuticals; TG Therapeutics; Theravance; UCB Pharma; United Therapeutics; Vifor Pharma; Wave Life Sciences; Zogenix

Study Snapshot

Best Practices, LLC engaged 54 leaders from 44 leading biopharma organizations in this research through a benchmarking survey. Deep-dive interviews were conducted with select few participants to provide further insight. More than 80% of benchmark participants serve at Director / Head level and above. Insights in this research are segmented by company size (mid vs. large pharma) and reporting structure of patient advocacy teams to offer multiple relevant lenses on strong performance.

Key topics covered in this report include:

  • Mechanics of Partnerships with Patient Advocacy Groups
  • R&D Partnerships with Patient Advocacy Groups
  • Transforming Policy and Access with Patient Advocacy Groups
  • Improving Health and Disease Awareness with Patient Advocacy Groups
  • Leveraging Telehealth to Improve Patient Centricity
  • Best Practices in Leveraging Internal Patient Advocacy Interactions

Key Findings

Select key insights uncovered from this report are noted below. Detailed findings are available in the full report.

  • Disease Awareness Coordination: Marketing (88%), Medical (85%), and Communications (83%) are the groups most often tasked with coordinating on disease awareness program generation.
  • Telehealth Opportunities: 67% of advocacy teams reported they are developing new ways to enhance the patient experience with telehealth.
Table of Contents

Sr. No.
Topic
Slide No.
I.
Introduction: Study Objectives, Methodology, and TopicsPg. 4
II.
Executive SummaryPg. 5
III.
Benchmark Class, Segmentations, and DemographicsPg. 6
IV.
Mechanics of PartnershipsPg. 11
Proposal Submission DifficultyPg. 13
Vertical and Horizontal ReportingPg. 16
Activities to Build PAG RelationshipsPg. 20
Patient Journey Involvement and Pandemic ChallengesPg. 21
V.
Improving Disease AwarenessPg. 24
Disease Awareness Coordination and Budget LocationPg. 25
Disease Awareness Digital Tools and TelehealthPg. 29
VI.
R&D PartnershipsPg. 33
Advocacy Influence on R&DPg. 34
Advocacy Role in R&DPg. 38
Advocacy Data Types Collected for R&DPg. 39
VII.
Policy and Access PartnershipsPg. 42
Legal and Compliance Involvement in Advocacy ActivitiesPg. 43
Partnerships with Government AffairsPg. 46
Transparency of Financial PartnershipsPg. 49

    List of Charts & Exhibits

    I. Mechanics of Partnerships

    • The goals of Advocacy’s internal partnerships

    A. Proposal Submission Difficulty

    • Overall difficulty, in terms of time and effort necessary to complete, for submitting proposals for partnerships with patient advocacy groups; and Reasons for difficulty – Total benchmark class
    • Overall difficulty, in terms of time and effort necessary to complete, for submitting proposals for partnerships with patient advocacy groups – Large pharma vs. mid pharma segment
    • Overall difficulty, in terms of time and effort necessary to complete, for submitting proposals for partnerships with patient advocacy groups – Budget location segments (Commercial, Medical Affairs, Corporate Affairs and C-Suite)

    B. Vertical and Horizontal Reporting

    • Vertical reporting structure of patient advocacy functions – Total benchmark class
    • Vertical reporting structure of patient advocacy functions – Large pharma vs. mid pharma segment
    • Horizontal reporting structure of patient advocacy functions

    C. Activities to Build PAG Relationships

    • Effectiveness of various activities designed to help advocacy teams coordinate their relationships with patient advocacy groups

    D. Patient Journey Involvement and Pandemic Challenges

    • Lead / support role of patient advocacy teams in activities throughout the patient journey
    • Benchmark partner’s recent success story that arose from collaborating internally with another function around patient advocacy to impact the lives of patients
    • Benchmark partners’ narratives around adapting to the challenges posed by the COVID-19 pandemic

    II. Improving Disease Awareness


    A. Disease Awareness Coordination and Budget Location

    • Functions with which advocacy teams partner to develop or implement disease awareness programs
    • Benchmark partners’ successful collaboration stories between marketing and communication
    • Function that holds the budget for the design and implementation of disease awareness programs
    • Benchmark partner’s narrative around patient ad boards

    B. Disease Awareness Digital Tools and Telehealth

    • Digital tools used by patient advocacy groups that have a positive impact on disease awareness
    • Benchmark partners’ narratives around successful internal collaborations with other functions around patient advocacy to impact the lives of patients
    • Patient advocacy team involvement in improving the telehealth experiences of patients
    • Innovative ways in which patient advocacy teams are leveraging the power of telehealth services

    III. R&D Partnerships


    A. Advocacy Influence on R&D

    • Impact of patient advocacy team’s effort on guiding research and development – Total benchmark class
    • Impact of patient advocacy team’s effort on guiding research and development – Large pharma vs. mid pharma segment
    • Impact of patient advocacy team’s effort on guiding research and development – Budget location segments
    • Benchmark partners’ narratives around successful collaboration with the R&D function around patient advocacy to impact the lives of patients

    B. Advocacy Role in R&D

    • Roles fulfilled by internal advocacy teams when partnering with the R&D group

    C. Advocacy Data Types Collected for R&D

    • Types of data collected by advocacy teams from patient advocacy groups to inform R&D
    • Benchmark participants’ partnership success stories
    • Benchmark partner’s narrative around successful collaboration with the clinical team

    IV. Policy and Access Partnerships


    A. Legal and Compliance Involvement in Advocacy Activities

    • Legal’s / compliance’s guidelines when reviewing communications and submissions to patient advocacy groups – Total benchmark class
    • Legal’s / compliance’s guidelines when reviewing communications and submissions to patient advocacy groups – Budget location segments
    • Impact of patient involvement with the FDA

    B. Partnerships with Government Affairs

    • Effectiveness of partnerships with Government Affairs in changing government policy to improve access to medications
    • Legal and compliance involvement in patient advocacy activities
    • Effectiveness of partnerships with Government Affairs in changing government policy to improve access to medications – Budget location segments

    C. Transparency of Financial Partnerships

    • Disclosure of financial data on advocacy teams’ contributions to patient advocacy groups – Total benchmark class
    • Disclosure of financial data on advocacy teams’ contributions to patient advocacy groups – Large pharma vs. mid pharma segment