Disease Awareness Program Excellence: Structure, Activities, and Resources Needed for Effective Pipeline Support

Industries Profiled:
Pharmaceutical; Manufacturing; Biotech; Consumer Products; Diagnostic; Medical Device; Biopharmaceutical; Public Relations; Chemical; Health Care; Communications; Clinical Research; Laboratories


Companies Profiled:
AbbVie; Adamas Pharmaceuticals; AstraZeneca; Bayer; Biogen; Catalyst Pharmaceuticals; CSL Behring; Daiichi Sankyo; Eli Lilly and Company; EMD Serono; FleishmanHillard; Fresenius Medical Care; Genentech; Genzyme; Indivior; Merck KGaA; Merck Sharp & Dohme; Myovant Sciences; Nevakar; NexGen Healthcare; Novartis; Prometheus Laboratories; PruGen Pharmaceuticals; Sanofi; Teva Pharmaceutical Industries Ltd; Tokai Pharmaceuticals; Vertex Pharmaceuticals; ZS Pharma

Study Snapshot

Best Practices, LLC engaged 30 leaders from 28 top life sciences organizations in this benchmarking research. Four executives participated in deep-dive operational interviews. Secondary research is occasionally provided for context.

Key topics covered in this report include:

• Disease awareness program structure
• Timing of disease awareness activities
• Budget and spending for disease awareness programs
• Involvement of Advocacy Groups and Legal in disease awareness
• Use of social media for disease awareness

• Activities and Alliances

• Most disease awareness efforts begin during clinical trials and end at launch +3 years
• Disease awareness activities concentrated on launch year and launch -1 year

• Social Media

• Continually monitor and modify social medical activities
• Message boards and moderators provide great direct feedback to manufacturers

• Overall effectiveness of disease awareness programs
• Best practices for maintaining an effective disease awareness program
• Common pitfalls or stumbling blocks observed as part of a disease awareness program

• Organizational structure of disease awareness programs – Total benchmark class
• Organizational structure of disease awareness programs – Large pharma vs. Mid-small pharma, Global teams vs. Country level teams, Single brand teams vs. Portfolio teams
• Functional involvement and leadership of disease awareness programs
• Reporting structure and leadership of dedicated disease state awareness group

• Start and endpoints for disease awareness resourcing – Total benchmark class
• Start and endpoints for disease awareness resourcing – Large pharma vs. Mid-small pharma
• Start and endpoints for disease awareness resourcing – Global teams vs. Country level teams
• Start and endpoints for disease awareness resourcing – Single brand teams vs. Portfolio teams
• Start and endpoints for disease awareness resourcing – Highly competitive market vs. Less competitive market
• Interview narratives around the dividends from disease awareness programs
• Utilization of disease awareness activities and timing of each of these activities
• Most utilized disease awareness activities

• Timing of disease awareness investment across development & launch cycle
• Total budget for disease awareness initiatives, activities and programs during the current budget year – Large pharma vs. Mid-small pharma
• Peak year disease awareness investment – Large pharma vs. Mid-small pharma
• Total budget for disease awareness initiatives, activities and programs during the current budget year – Global teams vs. Country level teams
• Total budget for disease awareness initiatives, activities and programs during the current budget year – Single brand teams vs. Portfolio teams
• Factors influencing the amount of resources dedicated to disease awareness programs on a product-by-product basis – Total benchmark class
• Factors influencing the amount of resources dedicated to disease awareness programs on a product-by-product basis – Large pharma vs. Mid-small pharma
• Factors influencing the amount of resources dedicated to disease awareness programs on a product-by-product basis – Single brand teams vs. Portfolio teams
• Functions providing funding for disease awareness programs
• Disease awareness investment for a new product that serves an unmet need or is in a therapeutic area where there are limited choices

• Interview narratives around patient advocacy group relationships
• Importance of each patient advocacy group activity and support service from a disease awareness program perspective – Total benchmark class
• Importance of each patient advocacy group activity and support service from a disease awareness program perspective – Global teams vs. Country level teams
• Importance of each patient advocacy group activity and support service from a disease awareness program perspective – Single brand teams vs. Portfolio teams
• Best approaches to support disease awareness activities with patient advocacy groups
• Importance of highly effective patient advocacy group activities and support services from a disease awareness program perspective – Global teams vs. Country level teams
• Importance of highly effective patient advocacy group activities and support services from a disease awareness program perspective – Highly competitive market vs. Less competitive market
• Timing of disease awareness activities with patient advocacy groups
• Level of involvement of legal department in each of the listed disease awareness program areas – Total benchmark class
• Level of involvement of legal department in each of the listed disease awareness program areas – Global teams vs. Country level teams
• Level of involvement of legal department in each of the listed disease awareness program areas – Single brand teams vs. Portfolio teams
• Interview narrative around managing successful programs with legal groups

• Disease Awareness Activities conducted on social media and timing of first initiation of each activity – Total benchmark class
• Disease Awareness Activities conducted on social media and timing of first initiation of each activity – Large pharma vs. Mid-small pharma
• Utilization ranking of social media activities for generating disease awareness
• Interview narrative around ensuring patient access via social media
• Interview narrative around getting direct feedback and insights
• Total investment in social media disease awareness activities during the last fiscal year – Total benchmark class
• Total investment in social media disease awareness activities and percentage of overall disease awareness budget spent on social media – Large pharma vs. Mid-small pharma
• Total investment in social media disease awareness activities and percentage of overall disease awareness budget spent on social media – Global teams vs. Country level teams
• Total investment in social media disease awareness activities and percentage of overall disease awareness budget spent on social media – Single brand teams vs. Portfolio teams

• Geographic and marketing perspective of participants represented in the study
• Therapeutic areas represented in the study
• Job titles of benchmark participants