Patient Advocacy: How Top Pharma Companies Partner with Advocacy Groups to Shape Policy, Improve Access, and Boost Patient Voice

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


Companies Profiled:
AbbVie; Acceleron Pharma; Agendia; Alnylam Pharmaceuticals; Amicus Therapeutics; ApotheCom; Astellas; AveXis; AVROBIO; Baldwin Area Medical Center; Bayer; Biogen; BioMarin; Bionical Emas; Blue Earth Diagnostics; Bluebird Bio; Boehringer Ingelheim; Covance; CRISPR Therapeutics; Daiichi Sankyo; Dermira; Forum Pharmaceuticals; Grifols; GlaxoSmithKline ; Genzyme; Horizon Pharma; Incyte; Ipsen; Janssen; Johnson & Johnson; Lexicon Pharmaceuticals; Lundbeck; Mallinckrodt; Merck; Milestone Pharmaceuticals; MSD; Natera; NexGen Healthcare Communications; Novartis; Novo Nordisk; OTSUKA; Parkway Pantai; Pfizer; Pharmacyclics; Reata Pharmaceuticals; Retrophin; Sage Therapeutics; Sanofi; Servier; Shire; Spark Therapeutics; Takeda Pharmaceuticals; Teva Pharmaceutical Industries Ltd; Theravance; Tillotts Pharma; UCB Pharma; Ultragenyx; Wave Life Sciences; Zimmer Biomet; Zogenix; The Mexican Organization for Rare Disorders (OMER)

Study Snapshot

Best Practices, LLC engaged 74 leaders supporting patient advocacy at 61 biopharmaceutical companies through a benchmarking survey. More than 60% of participants are at the director/ senior director level. Nearly 65% of participants are from the United States.


Key topics covered in this report include:

• Understanding the “advocacy” landscape
• Effective practices for working with potentially hostile patient advocacy groups
• Advocacy structures that work best
• Advocacy tools
• Critical competencies of advocacy professionals
• Advocacy lessons learned from socially sensitive or stigmatized disease areas
• Profiling advocacy group experience & expertise

• Structuring high performance pharma advocacy groups: There is no one-size-fits-all approach to structure for pharma patient advocacy groups; however, centralized structure dominates with nearly 60% participants adopting it. Only 22% have decentralized structure and 18% have hybrid structure. More than half of the companies consider their advocacy group structure effective.

• Companies use soft metrics to assess patient advocacy effectiveness: Effective advocacy groups in pharma develop a system to measure the effectiveness of their activities and relationships. Intangible metrics like action taken by stakeholders, perception changes, sustainability of programs and progress measured against set goals are commonly used.

• New technologies for patient education: Video sites, social networks, professional networks, and podcasts have created new channels and opportunities for internal and external advocacy groups to educate patients. This study reveals that 80% of participants rated social network groups like Facebook as important. Likewise, 78% rated YouTube and other video sites as important.

I.	Overview	pgs. 3-12
	Research Overview	pg. 4
	Universe of Learning	pgs. 5-6
	Patient Advocacy	pg. 7
	Key Recommendations	pg. 8
	Key Findings	pgs. 9-12
II.	Patient Advocacy Functional Structure	pgs. 13-22
III.	Patient Advocacy Partner Coordination & Effectiveness	pgs. 23-26
IV.	Developing & Optimizing Patient Advocacy Partnerships	pgs. 27-31
V.	Managing Relationships Within Controversial Disease States	pgs. 32-40
VI.	Current Trends & Future Directions	pgs. 41-45
VII.	Regulatory Impact on Patient Advocacy	pgs. 46-52
VIII.	Use of Technology, Future Trends & Issues	pgs. 53-57
IX.	Ethics and Patient Advocacy Relations	pgs. 58-61
X.	Lessons Learned	pgs. 62-70
XI.	Participants’ Profile	pgs. 71-73
XII.	Appendix	pgs. 74-127
XIII.	About Best Practices, LLC	pg. 128

• Structure of company’s patient advocacy function
• Efficacy of current structure of patient advocacy function
• Optimal structure for an internal patient advocacy group with reasons
• Interview narrative around company-sponsored summits
• Ensuring that patient advocacy organizations may properly contact or communicate with your company’s patient advocacy functional personnel
• Interview narratives on using Medical Affairs as a contact point
• Estimated number of FTEs dedicated to patient advocacy activities
• Patient advocacy experience of benchmark partners
• Number of patient advocacy groups currently supported by benchmark companies and expected to support in the coming year

• Effective metrics for measuring the success of patient advocacy activities and relationships
• Effective approaches designed to coordinate relationships with patient advocacy groups
• Effective methods for prioritizing objectives when a patient advocacy group maintains relationships with multiple brands or therapeutic areas

• Importance of patient advocacy collaborations at different lifecycle stages
• Most important forms of education, program support, and grants/sponsorships during each of the four key lifecycle stages
• Best approaches to deploy advocacy grants/sponsorships for early-stage support with advocacy groups
• Effective strategies for gaining early-stage support with advocacy groups

• Interview narrative around demonstrating the benefits of a collaborative relationship to advocacy groups
• Most critical considerations when managing collaboration with an advocacy group regarding therapies that may trigger controversy or social stigma
• Interview narrative around education being a key element when working in areas with a social stigma
• Most effective approaches in educating the market on conditions that may be highly controversial or have a social stigma
• Special interest groups’ impact
• Interview narrative around transparency being key to collaborating on social stigma disease areas
• Most effective strategies and tactics in minimizing opposition from patient advocacy or other special interest groups against a therapy that could be considered controversial
• Interview narrative around listening to external partners for achieving success with advocacy groups

• Interview narrative around developing an advocacy approach depending upon the maturity level of a patient advocacy group
• Current factors in the marketplace that should receive the greatest consideration with respect to patient advocacy issues
• Interview narrative around working on the overall negative attitude toward pharma companies
• Interview narrative around taking inputs into development process from patient advocacy groups

• Interview narrative around patient groups’ involvement in drug development
• Interview narrative around engagement of patient groups in many aspects of clinical studies
• Funding of clinical trial studies by patient advocacy groups
• Impact of initiatives such as the 21st Century Cures Act on patient advocacy strategies and tactics to address them
• Interview narrative around patient groups’ interaction with regulatory agencies
• Impact of patient involvement in government regulatory agencies, including the FDA and the Prescription Drug User Fee Act on advocacy initiatives within benchmark companies

• Importance of listed platforms in delivering education to patient groups
• Issues or opportunities foreseen as important for patient advocacy over the next 36 months
• Interview narrative around understanding external group’s perspective to build effective relationship
• Maintaining strong relationships with existing advocacy groups, while also expanding to regional groups and providing strong support to national policies

• Interview narrative around abiding to ethical boundaries when interacting with patient groups
• Ethical boundaries adhered to while working with patient advocacy groups
• Interview narrative on the do’s and don’ts for effective advocacy relationships

• Interview narrative: Not all patient advocacy groups are effective organizations
• Most “painful” lessons learned by benchmark partners about relationships with patient advocacy groups
• Interview narrative around one of the biggest concerns that external cancer advocacy groups have and one of the ways to mitigate it
• Top success stories about relationships with patient advocacy groups
• Interview narrative around working with competitors to advance patient welfare
• Interview narrative around building relations
• Interview narrative: Patient groups are not always effective in the policy-making process
• Additional insights in patient advocacy

• Demographics of benchmark partners
• Therapeutic area represented by benchmark partners

• Voices from the field: Optimal structure for an internal patient advocacy group along with reasons
• Voices from the field: Organization of patient advocacy in a formal structure and improving the structure
• Voices from the field: Organization of patient advocacy in an informal structure and improving the structure
• Voices from the field: Top collaboration issues when working with socially sensitive diseases
• Voices from the field: Best approaches to minimize opposition from special interest groups
• Voices from the field: Current issues challenging patient advocacy
• Voices from the field: Impact of new regulations and addressing them
• Voices from the field: Patient involvement in government regulatory agencies
• Voices from the field: Future patient advocacy issues and opportunities
• Voices from the field: Patient advocacy, religious or other special interest groups having a greater impact
• Voices from the field: Ethical boundaries while working with patient advocacy groups
• Voices from the field: Painful lessons learned about relationships with patient advocacy groups
• Voices from the field: Success stories about relationships with patient advocacy groups
• Voices from the field: Benchmark partners’ experience in working with patient advocacy groups