One Detail Clinical Researchers Must Know About Social Media

I want to apologize to clinical research professionals who regularly read this blog. You are about to hear a message you’ve heard from me several times.

But I think spreading this message is essential if the clinical research industry is to harness the potential of digital patient recruitment. I have not dedicated a full post to this topic before, and I think it will be helpful for clinical research professionals looking for some foundational knowledge about social media.

In discussions about digital patient recruitment, the term “social media” continues to be used to describe activities that are not social media. Commonly, the term “social media” is used to describe any patient recruitment activity occurring online. Or it’s often used to describe advertisements appearing on social media platforms. Unfortunately, neither use is correct.

social media patient recruitment

For those with just a passing knowledge of digital media, the distinction between social media and other forms of digital media may seem unimportant. But it is important. Here’s why.

Why Should You Care?

Because consistent terminology is needed to craft good strategy and advance knowledge.

To illustrate this point, I’ll borrow an example from my days as a clinical research coordinator. When a subject was screened for an Alzheimer’s study, he had a CT or MRI to rule out other causes of dementia. The most common other cause was vascular dementia.

But why distinguish between these forms of dementia? The symptoms of Alzheimer’s and vascular dementia are quite similar. They are so similar, in fact, that brain imaging is often needed to distinguish between the two. Seems close enough. Why not just lump them together and call them both Alzheimer’s?

Because these definitions have evolved for very important reasons. First, in a general healthcare context, the treatment strategy for each is different. If a clinician fails to understand these definitions and their importance, his treatment plan is likely to be flawed.

Second, a mutual understanding of terminology is needed to advance our knowledge about these diseases. It’s difficult to constructively analyze and discuss results without consistent understanding of important concepts. Clinical trial protocols exist for this very reason.

Similarly, understanding of core concepts is needed to craft solid digital patient recruitment strategy, as well as advance our knowledge on the subject.

Before discussing the definition of social media, it’s important to put social media in context.

Social Media and the Digital Ecosystem

Social media is part of a vast and rapidly changing digital media ecosystem that includes many components. Some examples are:

  • Websites
  • Mobile
  • Video
  • Organic Search
  • Paid Placement (search, social, and display advertisements)
  • Gaming
  • Podcasts (audio)
  • Email
  • Social Media

As you can see, many of these components are strongly intertwined with the Internet but not necessarily so. For example, text messages (mobile) are an extremely popular form of digital media, but they do not require an Internet connection. (If you’d like to read about mobile technology use in patient recruitment, check out this guest post from mobile expert Jeff Lee: “Mobilizing Patient Recruitment“)

The purpose of this list is not to get into individual definitions of these components. It’s merely to illustrate that social media is just one component of the digital media ecosystem. Certainly, the lines between components can be blurry, just as the lines between diseases can be blurry like in our example above.

And these components are heavily interdependent. Appreciation for this interdependency is key because a narrow focus on any one area will blind you to opportunities in other areas. In fact, a good digital strategy leverages this interdependency by using several digital components that complement each other well. As a very simple example, you might use social media to help drive traffic to your website.

This interdependency and blurring between components can cause confusion for those new to digital media. But these components are unique, each requiring a tailored strategy.

Social media, in particular, requires a very specific strategy. And this strategy is very different than the strategy that traditional marketers have used for decades. For this reason, understanding social media as a concept is extremely important.

What is Social Media?

If you asked experts for a definition of social media, you would get many different answers because the digital ecosystem is evolving so quickly. Luckily, I didn’t have to survey various experts for their definitions. Someone else already did. Check out this blog post for a variety of expert opinions on social media’s definition.

Despite the variability in these 30 definitions, a key theme runs throughout. The word “interactive” or “interaction” appears in 12 of 30 definitions. Synonyms and words closely related to the words “interactive” or “interaction” (e.g. conversations) appear in almost all 30 of the definitions.

I personally find the Wikipedia definition to be quite accurate and concise:

social media definition

Note that “one-way,” “broadcasting,” “advertising,” or other terms associated with more traditional forms of media do not appear in these definitions.

So what’s the one detail referenced in the title? At its core, social media is interactive. And without interaction, media is not social. It’s some other form of media.

So what does this definition mean in practice?

Social Media and Patient Recruitment in Practice

Patient recruitment activities only qualify as social media when interaction is involved. To illustrate the theory in practice, here are some examples.

social media ad

These Facebook ads, though often effective, are not social media.

Facebook advertising is a very useful patient recruitment tool that is gaining in popularity. Because these ads appear on a social media platform, one might conclude that Facebook ads are social media. But are they?

No. They are broadcasting a message without any interaction from potential patients, therefore these ads are not social media. They are social media advertisements. In fact, social media advertisements have far more in common with search advertisements (like you might see on Google) than with true social media.

Or imagine a research site that has a Facebook Page (as many do) to post information, allow fan comments, and interact with potential participants. In this instance, the research site is in fact using social media.

To take another common example, consider a website created for patient recruitment purposes. Is this social media? Depends. Only if the website allows interaction. In the vast majority of cases, patient recruitment websites are static “brochures” that do not allow interaction. So these websites do not qualify as social media.

Now lets discuss a trickier (real life) example.

Pharma and Facebook: The Great Clash of 2011

patient recruitment interaction

Interactivity is the core of social media.

As Facebook became increasingly popular, pharma marketers wanted a Facebook Page for their brands. But there was a problem. The Facebook platform did not allow page owners to disable wall comments. And marketers believed these comments could present regulatory problems with regard to off-label promotion, etc.

Because of the unique regulatory requirements of pharma marketing, Facebook agreed to give pharma marketers special treatment. By contacting their Facebook rep, pharma marketers could request that Facebook disable wall commenting on their page.

And then Facebook and pharma coexisted happily ever after. Well, not exactly.

In 2011 Facebook changed its policy. Facebook announced that it would no longer disable wall comments for pharma, causing quite an uproar in the pharma marketing community. And some brands ultimately shut down their Facebook Page. Here’s what Facebook had to say about its decision:

We think these policy changes support consistency for the Facebook Pages product and encourage an authentic dialogue between people and businesses on Facebook.

Former FDA associate commissioner Peter Pitts, now the president of the Center for Medicine in the Public Interest, agreed with Facebook’s perspective:

The Facebook decision is entirely consistent with what Facebook is designed to be — interactive. A Facebook page with the interactivity turned off is just a static web page residing on an interactive platform. And that isn’t what Facebook is all about. It’s time for regulated industry to step up to the plate and embrace the powerful tool that is real-time interactivity.

So what do you think? Are Facebook Pages without comments truly social media?

A definitive answer to this question does not exist. However, most social media experts would argue that a Facebook Page without comments is not social media. Without comments, Facebook Pages lack the interactivity that is the essence of social media.

When in Doubt, Go Broad

If digital media is not your area of expertise, all of this can get confusing, particularly considering rapid change in the digital media industry.

So what should you do if you aren’t really sure about digital terminology and concepts? To revisit our medical example above, consider a clinician that knows his patient has dementia but is not sure of the type. He doesn’t just pick one of the types. Instead, he uses broad but accurate terminology like dementia.

The same approach works here. Go broad. If you aren’t sure how to describe a patient recruitment activity occurring online, use a term like “online marketing” or “Internet marketing.” These terms broadly encompass a variety of activities. Or you can go even more broad by using terms like “digital media” or “digital marketing.”

Now you should have a pretty good understanding of social media as a concept. And you might have some comments or questions. By all means, please put them below. I do my best to respond.

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  1. says

    Thank you so much for taking the time to write this excellent comment. I completely agree!

    Trust and relationships are everything in social media, which is why it presents some difficulty for protocol-specific recruitment. Trust takes time to build, and protocol-specific recruitment is on a finite timeline. 

    We cannot expect to bombard patients with trial information via social media and have them react positively. No one likes advertisements, but we all kind of endure them because we know that ads are what pay for a free web experience. People accept this tradeoff.

    But the attitude with social media is entirely different. Social media users are very sensitive to any sort of promotional content invading their social content (and when I say “they,” I mean me as well). That’s not to say they are completely opposed to it. But we must immediately and consistently provide them with value and earn their trust. Seth Godin popularized the term “permission marketing” to refer to this phenomenon. 

    Your comment about “let’s not blow it” resonated quite a bit with me. Part of the reason I write about social media so much is because I’ve witnessed clinical researchers bombard (spam) patients in this way. That’s just not how social media works. And I worry that the social media users bombarded in this way will be completely turned off from clinical trials in the future because of one bad interaction. Given the challenges of patient recruitment, this is not something we can afford.

    Though I think social media has some challenges in terms of protocol-specific recruitment, I think it is a *great* opportunity for education and awareness. But there are no shortcuts. The industry has to be willing to commit to long term engagement where there may be no immediate discernable benefits. A social media presence takes a lot of time to become successful. It is not the space for “launch and leave” messaging, and you have to be genuinely interested in providing value.

    I second your recommendation on that TED talk. Everyone with an interest in patient recruitment (or healthcare, for that matter) should watch it. Thanks so much for sharing your excellent thoughts on this issue, David. 


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