A First-Person Social View of the FDA Hearings

A First-Person Social View of the FDA Hearings


Melissa Davies, Research Director, Healthcare, Online Division

On November 12-13, I took part in a Washington D.C., hearing organized by the FDA on how pharmaceutical companies can use the Internet and social media to communicate with consumers. The hearing was a source of excitement in the healthcare industry – the FDA received more than 800 requests for 350 seats.

More and more consumers are online looking for information on their health…
Over two days, more than 60 speakers – representing pharmaceutical companies, agencies, research firms, search and social media websites along with consumer organizations – shared their thoughts on how companies can responsibly engage consumers online, as well as questions and areas that need clarification from FDA.

Despite the variety of industries and agendas represented, I was surprised by the amount of consistency in the presentations and recommendations. Through the two days of the hearing, a few key themes emerged:

  • No one can ignore the explosive power of social media.

    Several speakers shared great data about how often the Internet is used as a source for healthcare information. With patients, caregivers and doctors alike going online for healthcare information, it simply is not an option for pharmaceutical companies to remain separated from this discussion.

  • No one company can be expected to monitor the whole of the Internet.

    In our Nielsen BuzzMetrics dataset of health-specific CGM sites, we collected an average of 83,000 messages per day over the past six months. This volume will only continue to grow, and no one can expect to monitor all of it.

  • Pharma is ready to listen, but confusion persists.

    Most pharmaceutical companies would like to listen and even respond to consumer feedback online. However, there is confusion among pharmaceutical companies about how and when it is appropriate for them to engage with consumers online, and what responsibilities they have in doing so. This confusion often results in companies holding back on engaging in social media and sometimes even in listening to what their consumers are saying online.

  • Adverse events are a red herring.

    Companies that have not done social media listening often have a fear that they will see a high volume of adverse events in online consumer conversation. (And for pharmaceutical companies, there is a requirement that these events are followed up and reported to the FDA.) In fact, the number of adverse events in online discussion is very low and manageable within the reporting systems that pharmaceutical companies already have in place.

This last point was the basis of my testimony at the hearing. In 2008, Nielsen analyzed online healthcare discussion to define the number of adverse events and found that just 4 of 500 messages contain adverse event information, and only 1 of those messages contained all of the criteria that are required for AE reporting.

For me, the key takeaway from the FDA hearing was this: More and more consumers are online looking for information on their health. Some of the information they find online is good, but some is not, and it’s not always easy to tell the difference. Right now anyone can contribute to the online health discussion except the pharmaceutical companies, who are waiting for guidelines from the FDA about how to engage online in an appropriate and responsible way.

There was a sense of hope among attendees at the hearing that the FDA will provide new guidelines on the Internet and social media relatively soon. When that happens, not only do we empower the pharmaceutical companies to interact with consumers online, but we give them a sense of duty to contribute to the conversation in a responsible way. Of course it’s not appropriate for pharmaceutical companies to get involved in every consumer discussion about healthcare online. But where these companies can contribute value to the discussion, let’s empower them to do just that.

Like many of my colleagues in the pharmaceutical/healthcare field, I look forward to watching and participating as the discussion continues to unfold.