Skip to main content

Table 3 Probing questions from the Independent Expert Panel meeting, for possible use with the Guidelines

From: Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases

Identification and Engagement With Companies  
 • What changes occur when more than one patient advocacy organization is involved?  
 • What changes occur when more than one industry partner is active?  
 • How can the challenges of having only one biopharmaceutical company in the particular rare disease space be addressed?  
Patient Engagement and Patient Privacy  
 • What does a great patient advocacy organization look like?  
 • What are the ways that individual patient advocacy organizations can facilitate bringing back information to the disease community?  
 • What are some reasons that patient advocacy organizations should be included in conversations with industry?  
 • How should patient advocacy organizations handle various aspects of confidential information as an organization?  
Financial Contributions  
 • Should there be a cap on the total percentage of funding from pharmaceutical companies? Should the cap depend on the size of the group?  
 • How should public disclosures of pharmaceutical funding be handled?  
 • Can industry employees serve on the boards of patient advocacy organizations?  
Clinical Trial Communication and Support  
 • How should patient advocacy organizations respond to misinformation on the Internet and in social media?  
 • What changes occur once a drug is commercially available?  
 • How should negative results of clinical trials be handled? How should that information be disseminated to the patient community?  
 • How should patient advocacy organizations handle issues surrounding compassionate use?  
 • Should patient advocacy organizations attempt to educate academic researchers on how to communicate with patients?  
 • Should patient advocacy organizations provide education and resources to patients about the informed consent process?