Would the Patient Safety Team ever contact me? If so, why?

Yes, there are a few situations when the patient safety team will send you a specific message to help collect as much data about your experience as possible.  This information is needed for two important reasons.  First, it allows other patients in the community to share in your experiences, and second, to allow the makers of the drug to get as clear a picture as possible as to the circumstances surrounding the side effects you experienced. Here are a few examples of when and how the patient safety team would contact you:

  • You've completed a Treatment Evaluation and report that you've experienced an adverse event that required hospitalization as a result of using a specific drug. You will receive a message that tells you how to provide additional information about your experience to help us learn more about the impact of the drug.

  • If you are pregnant and on certain medications, you may receive a message from our patient safety team with information on how to contact the pharmaceutical company in case you want to share more about the results of your pregnancy. Pregnancy is an important consideration for drug safety. When a drug is being developed and in clinical trials, pregnant women rarely use them. Once the drug is more widely used, it is important to learn about any effect it might have for the mother and the baby. The FDA requires drug companies to collect and report as much information about these experiences as they can obtain.
  • If you experience a side effect with a drug and post a message about it in the Forum or mention it in your bio, the patient safety team may send you a message encouraging you to complete a Treatment Evaluation for that drug (if you haven't already done so). Our lively Forum includes lots of conversations about your real-world experiences with a disease, including those about side effects and other reactions to drug products. We encourage you to not only share in the Forum, but also complete a Treatment Evaluation so the community can learn from you, and so you can compare your experiences with others. All of the information you share about how these drug products impact your experience is helping drug companies, the FDA and other patients like you learn more and live better.

(NOTE: Drug safety activities are available only for specific medications, but will be expanded over time.)

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