Patient Advocacy: Abiding Ethical Boundaries & Regulatory Impact on Patient Advocacy in the United States

As treatment options in the United States become more complex and plentiful, it is important for pharmaceutical organizations to collaborate with key patient advocacy groups to educate the public about new treatments and scientific advancements. At the same time, organizations must remain compliant with the ever-growing regulations surrounding relationships with external patient groups.

Best Practices, LLC undertook this benchmarking research to identify effective ways for biopharmaceutical organizations to collaborate with patient advocacy groups in the United States. In particular, this research provides insights around ethical boundaries and the regulatory landscape for patient advocacy partnerships in the US. This study also contains a chapter with qualitative data from benchmark partners regarding adherence to ethical boundaries and addressing regulatory impact for patient advocacy initiatives in the United States.

KEY TOPICS

• Understanding the Advocacy landscape
• Strategies to address regulatory impact
• Clinical trials funding
• Adhering to ethical boundaries

• Do patient advocacy groups that your organizations support fund clinical trial studies?
• How much impact do you think initiatives such as the proposed 21st Century Cures Act could have on patient advocacy strategies at your company?
• What are the ethical boundaries that you adhere to while working with patient advocacy groups?

• Mapping the advocacy landscape to succeed: Assess the landscape of advocacy and community- interest groups to understand the broad spectrum of players, special interests and possible collaborators. Align objectives with different advocacy groups based on a particular therapeutic area or region. Be transparent while sharing information that can be deemed useful for advocacy groups. Aim to build long-term relationships.

Best Practices, LLC engaged 48 leaders supporting patient advocacy initiatives at 43 biopharmaceutical companies in the United States through a benchmarking survey.

If you purchase Best Practice Database document(s), you will have 30 days from the date of purchase to apply some or all of the cost of the document(s) toward the cost of a Full Access Individual, Pharma, Group or University Membership. Write us at DatabaseTeam@bestpracticesllc.com or call David Guinn at 919-767-9179 if you have any questions.