Patient Advocacy: Structure, Effectiveness and Relationship Management Outside the United States

STUDY OVERVIEW

Pharmaceutical organizations are increasingly relying on their relationships with patient advocacy groups to educate and inform patients about new therapies and treatment options. During the same period that advocacy groups have risen in importance, pharma has been shifting its structural approach to maximize the efficiency of its interactions with external patient groups.

Best Practices, LLC conducted this benchmarking research to examine the ideal structures and staffing for pharma organizations that deal with advocacy groups outside the United States. This study also reviews effectiveness measures and relationship management for patient advocacy groups.

This study has been segmented so that all respondents represent groups that operate outside of the United States.

KEY TOPICS

• Understanding the advocacy landscape
• Patient Advocacy Functional Structure
• Patient Advocacy Partner Coordination & Effectiveness
• Developing & Optimizing Patient Advocacy Partnerships
• Managing Relationships Within Controversial Disease States

KEY METRICS

• How would you describe the structure of your company’s patient advocacy function?
• Do you feel the current structure of your patient advocacy function is appropriate for your organization?
• How does your company ensure that patient advocacy organizations may properly contact or communicate with your patient advocacy functional personnel?
• Please estimate the number of FTEs within your organization dedicated to patient advocacy activities
• How many years of experience do you have working on patient advocacy objectives?
• How many patient advocacy groups do you support or plan to support in the coming year?
• Which metrics are effective for measuring the success of your patient advocacy activities and relationships?
• Which methods are most effective for prioritizing objectives when a patient advocacy group maintains relationships with multiple brands or therapeutic areas?
• Which lifecycle stage is most important for patient advocacy collaborations?
• What education, program support, and grants/sponsorships are most important during each of four key lifecycle stages?
• What approaches are most effective in educating the market on conditions that may be highly controversial or have a social stigma?
• What current factors in the marketplace do you feel should receive the greatest consideration with respect to patient advocacy issues?

• Steady rise in the number of advocacy groups supported by companies: Participating companies predict an increase in the number of external advocacy groups that their organization supports. Currently companies support an average of 19 advocacy groups. In the next two years, participants estimated they will support, on average, 23 patient advocacy groups. Meanwhile, companies have about 7 FTE in their patient advocacy groups, on average. These employees have 7 years of advocacy experience, on average.

This study engaged 26 leaders supporting patient advocacy at 23 life sciences companies and organizations. All the respondents represent groups that operate outside of the United States.

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