Collaborating with Patient Advocacy Groups: Regulatory Impact, Technology Use & Future Trends

STUDY OVERVIEW

Pharmaceutical organizations seek to collaborate with key patient advocacy groups to educate the public about new treatments and scientific advancements. At the same time, it is vital for organizations to be compliant with the ever-growing regulations in the industry.

Best Practices, LLC undertook this benchmarking research to identify current and emerging trends in patient advocacy. In particular, this study examines regulatory impact, use of technology, adherence to ethical boundaries and lessons learned in patient advocacy.

KEY TOPICS

· Understanding the “Advocacy” Landscape
· Current Trends & Directions Surrounding Patient Advocacy
· Impact of New Regulations & Strategies to Address the Impact
· Use of Technology in Patient Education & Future Opportunities
· Ethical Boundaries Adhered
· Advocacy Lessons Learned from Socially Sensitive or Stigmatized Disease Areas
· Top Success Stories About Relationships with Patient Advocacy Groups

KEY METRICS

· Current Issues Surrounding Patient Advocacy
· Funding of Clinical Trial Studies by Advocacy Groups
· Impact of New Regulations on Patient Advocacy Strategies and Tactics to Address the Impact
· Importance of Different Platforms in Delivering Patient Education

SAMPLE KEY FINDINGS

· New Technologies For Patient Education: Video, social networks and internet tools all create new channels and opportunities for internal and external advocacy groups to educate patients. Field research reveals that social networking groups and videos are seen as the most effective technology tools for both disease and therapy education. Most respondents saw some value in all the different tools used to educate the public on either disorders or therapies that carry some social stigma.

METHODOLOGY

Best Practices, LLC engaged 24 leaders from 21 top bio-pharmaceutical companies through a benchmarking survey. In-depth interviews were conducted to gather more detailed information pertinent to this study. More than 50% of participants are at the director/ senior director level. More than 70% of participants are from the United States.

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