1. Identification and engagement of companies | |
1.1. Are there any conditions under which a patient advocacy organization should not be in contact with a pharmaceutical company? | |
1.2. Are there criteria a patient advocacy organization should use to decide whether or which companies to contact? | |
1.3. What information should a patient advocacy organization expect a company to share? | |
1.4. What information should a company expect a patient advocacy organization to share? | |
2. Patient engagement | |
2.1. Should a patient advocacy organization be involved in direct interaction between a patient and a pharmaceutical company? What does “involvement” in this case mean? | |
2.2. Are there circumstances under which a patient advocacy organization should not be involved in direct dialogue between patients and companies? | |
2.3. What are the reasons behind this recommendation? | |
2.4. For formal disease insight, is an advisory board preferred over individual input? Are there circumstances under which individual input is preferred or acceptable? | |
3. Financial contributions | |
3.1. Should patient groups accept financial contributions from pharmaceutical companies? If so, under what circumstances? | |
3.2. By what mechanisms should a patient group receive contributions? What processes should be in place for receiving and reporting the contribution? | |
3.3. Should patient group leaders accept honoraria for speaking on behalf of their organization? | |
3.4. Are there circumstances under which a patient advocacy organization could/should operate as a paid service provider to a pharmaceutical company? | |
4. Clinical trial communications | |
4.1. What is the role of a patient advocacy organization in “supporting” clinical trials? | |
4.2. Should a patient advocacy organization have criteria for which clinical trials it will “support”? | |
4.3. What role, if any, should a patient advocacy organization have in guiding or advising conversations about clinical trial participation on social media? | |
4.4. Should leaders of patient advocacy organizations (board members and other volunteer leaders) follow organizational practices when writing or speaking in personal blogs or other social media as a parent, family member, or affected individual? | |
5. Patient privacy | |
5.1. What role does a patient advocacy organization have in ensuring that pharmaceutical companies adequately protect patient privacy in surveys, advisory boards, or other community engagement? |