In recent news, we see further advances in identifying ways to capture the patient voice; in this instance, we see the FDA announcing a novel collaboration with the online patient network PatientsLikeMe.com.

The purpose of the collaboration is to “explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management.” In other words, the collaboration is going to try and capture the impact of adverse events on patients’ day-to-day lives, and establish whether these data are sufficient enough to affect label changes.

For me, seeing such an established institution as the FDA making strides to listen to and capture the patient voice is further evidence that the era of the empowered patient is well and truly upon us. And anything that we can do to capture and utilize real-world data must be a good thing – right?

These kind of initiatives are not without risks. For example, often data is anonymized and extensive patient history is absent. However, moving towards a space where we listen and hear patient voices/opinions as a matter of course is great news.

At AXON, we work hard to ensure the patient is at the heart of everything we do, and we work hard to listen to and understand the world through the patient’s eyes, as well as those of their loved ones. We have a variety of tools that support this philosophy, and we will be talking about this approach much more over the coming weeks.

By: Natalie Turner

References

1. http://www.firstwordpharma.com/node/1291389#axzz3dCZ6CXJn