Clinical Trials and Social Media – Part 1 in an Intermittent Series

Last week Brian Reid wrote an excellent piece on the Common Sense blog entitled “The 5 Consequences of the Lack of FDA Social Media Guidance“.  He got off to a great start, but I actually think there are many more than 5 and by way of friendly amendment, would like to add one now – the lack of guidance has meant that social media is not being used in an area where it could do a tremendous lot of good – clinical trial support.  Hence the beginning of an intermittent series here on Eye on FDA – Clinical Trials and Social Media.

Social media has fundamentally changed the way we communicate.  Many people don’t perceive it that way, and that’s fine.  But the impact of social media on traditional media has been profound and pervasive.  We have gone from broadcasting to niche-casting – from broad messages aimed at masses to granular messages aimed at very specific audiences. The eyeballs have moved from traditional to social – the ad revenues have moved from traditional to social – and even reporters have moved from traditional to social.  Social media has changed the landscape of communications – pervasively.

And yet recruitment for clinical trials – and support of patients in them – for the most part occurs the way it did fifteen years ago.  Why?

Think about social media in the context of clinical trial recruitment.  You have a medium that aims specific messages at very targeted audiences passed along by trusted intermediaries.

One example for the use of social media creatively in clinical trial recruitment is with YouTube.  Pharma YouTube channels are notoriously under-utilized and the content has largely been lackluster.  Some of the most successful channels in the past, however, have featured patients talking about living with their particular condition.

Following a diagnosis, clinical trials might be an attractive option for many patients, particularly for conditions where there are few treatments available, or where there are truly game-changing studies occurring.  But after finding out where clinical trials are being done – what is likely the next most important question on the part of a patient?  Mine would be this – what’s it like to go through a clinical trial?  What happens?  How does it impact my insurance?  I will have specific concerns and fears.

Yes, I could call someone and ask them.  But I also might be drawn into making that call in the first place if I am able to view a video of a patient who looks like me who talks to me about what it was like to go through a clinical trial.  What were his concerns?  How were they addressed?  What was it like when the trial was over?  In other words, why would a company conducting a clinical trial not have a culturally diverse set of patient videos talking about what clinical trials are like?

A few companies have developed YouTube channels aimed at the subject of clinical trials, but none that I have seen, have used patients.

Using patients to talk about their experience taking a specific treatment is risky from a regulatory perspective – they can easily broaden the indication or make a superiority claim if not heavily scripted.  A patient talking about what its like to go through a clinical trial – not so much.

And this is just one of many ways in which social media could be used to support clinical trials.  In the coming days, more will be explored here.

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6 Responses to Clinical Trials and Social Media – Part 1 in an Intermittent Series

  1. I’m not aware of any YouTube channels focused strictly on clinical trials from a patient perspective, but there are channels with significant patient-focused clinical trials content. Mayo, NIH, patient recruitment organizations, and others have published videos explaining clinical trials to patients.

    However, I agree that this is not enough. We need more informational resources for patients, but I don’t think a lack of social media guidelines is what’s preventing that education from happening. For the most part, the industry has focused more on protocol-specific recruitment rather than general clinical trials education and awareness for patients. And those priorities are reflected in the lack of good clinical trials educational content online.

    For protocol-specific patient recruitment, we will continue to need IRB approval of any clinical trials messages intended for prospective participants, regardless of any guidance by the FDA. Given the conversational tone of social media, this requirement will continue to pose a challenge for social media use in clinical trials recruitment.

    I’ve written on the topic of IRB and regulatory considerations of social media for patient recruitment on my clinical trials patient recruitment blog, in addition to other social media clinical trials topics. If these topics are of interest, you might want to check out the links above.

    Thanks for focusing on this topic. Clinical trials are often left out of pharma social media discussions, and clinical trials have a unique set of considerations when it comes to social media. So I’m glad to see these considerations being discussed in this blog.

    • Senak says:

      Thanks for the excellent commentary and resources. Especially regarding the IRB situation, which is very important. Thanks again.

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