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Patients Benefit from Open Dialogue and Scientifically Accurate Information on Medicines


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Some draft guidances issued by the Food and Drug Administration (FDA) have a more direct impact on patients than others. The Agency’s recent draft guidance on social media could have a direct impact on the ability of me and other patients to get information on the medicines we take and also to share our feedback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.

While I joined Twitter somewhat reluctantly for work, I am now hooked on it both professionally and personally. I’ve connected with other rare disease patients, some of whom I have had the opportunity to meet in person, and been able to share my experience as a stroke survivor. I research health conditions and medicines online to inform conversations with not only my doctor, but also my father’s medical team.

Both the FDA and the Department of Health and Human Services (HHS) clearly understand the value of online communication and interaction. Both are active on social media, with Facebook pages and multiple Twitter accounts, to reach patients and other consumers with news on new drug approvals, food recalls, healthcare reform and a host of other topics.

In comments to FDA on the draft guidance, PhRMA noted the critical importance of conveying reliable and timely information about medicines to patients and healthcare providers.

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.

Stephanie  Fischer is Senior Director of Communications at the Pharmaceutical Research and Manufacturers of America (PhRMA) in Washington, DC where she focuses on scientific and regulatory affairs as well as intellectual property. She is a rare disease patient and stroke survivor. You can find her on Twitter as @SDFatPHRMA.

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