Best Practices for Patient Advocacy Communications

Oftentimes, a company’s early patient advocacy efforts stem from the thought that patients are another stakeholder group to communicate to. This might sound obvious, but it’s critical to CONTINUE prioritizing this audience as therapies advance.

Whether you’re just beginning comms efforts in this area, partnering with an established patient advocacy function, or already have great patient community relationships, here are our top five must-dos:

1. Understand the environment: Are there several big patient advocacy organizations or a single foundation? Is the treatment landscape crowded or is your company developing the first new medicine in this space in a long time? Also, what are the dynamics like between patients, their caregivers and major KOLs?
2. Be aware of precedents you’re setting. For example, the timing of your first email or meeting with a PAO sets expectations for when you’ll engage with other communities related to future disease areas of focus. Are you initially engaging when your company declares a new program’s research efforts or not until there’s a development candidate?
3. Be transparent but intentionally. Although PAOs may not always agree to a confidentiality agreement, being up-front with your main contacts about a program’s status can earn trust and credibility.
4. Share consistent updates. Frequency and format will depend as much on your company stage as your PAO relationships, and can therefore take a variety of shapes. Maybe you’re having regular Zoom meetings, monthly email updates, or using quarterly earnings as a springboard.
5. Finally, consider how complicated your news is. Are there new terms or MOAs that need to be explained in a sensitive way? Assess whether regular corporate messaging is appropriate for this audience.

What else should we keep in mind when communicating with patient and caregiver communities?