Patients Benefit from Open Dialogue and Scientifically Accurate Information on Medicines

Global Genes Blogpost Examines Potential Impact of FDA Draft Guidance on Social Media

04.28.14 | By Stephanie Fischer

I was grateful to have an opportunity to explain in a guest blogpost for Global Genes how the Food and Drug Administration’s (FDA) recent draft guidance on social media could have a direct impact on the ability of me and other patients to get information on the medicines we take and also to share our feedback with the biopharmaceutical companies that develop those medicines.

As I noted in the guest blogpost:

While this guidance is an important first step in facilitating the availability of accurate and accessible information about medicines, key provisions discourage the exchange of this information by holding companies accountable for content written by patients or doctors on a third-party website if the company “influences” the third party.  One could argue that posing a question to patients on Twitter about their experience with a medicine “influences” the response as a patient would not Tweet about the medicine if the question hadn’t been posed.  Similarly, an ad for a medicine on an independent patient forum could be seen as exerting “influence” in the dialogue.  In either case, the FDA could then hold the company responsible for comments left by third parties, which could be problematic in a variety of circumstances (such as a reference to an off-label use of a medicine by a rare disease patient).

Biopharmaceutical companies have the most complete and up-to-date information about the medicines that they research, develop and manufacture.  As patients and doctors increasingly turn to the internet for information on medicines and other health topics, we should allow these companies to share accurate and non-misleading information through social media and other online forums. 

Otherwise, patients, caretakers and the public are left to depend on information about medicines posted online by unregulated entities that have no standards for accuracy.  This is not in our best interest.

For more information, please check out my Global Genes blogpost and PhRMA’s comments to FDA on the draft guidance.

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