Featured Story: Social Cues

Posted on at 2:49 pm
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by Kevin Gregory, Sr. Director of Education & Communications at Huntington Study Group

Every aspect of our lives has been impacted by constantly evolving technology. For some, it’s made our lives easier, while for others maybe it’s become more complicated (thinking specifically of the conversations around setting up my parents’ smart TV or smart phone). This evolution has also changed our behaviors as we adapt to the offerings of this digital age.

HD clinical trials are experiencing that evolution too. In some instances that evolution has lagged slightly behind the advances in technology. Think about the use of motion sensors. Motion capture sensors have been commonly used in movie magic for a couple decades, while even early generations of iPhones had gyrospcope sensors that detected lifting and tilting for integration with different apps. Perhaps the most well-known of these consumer-facing advancements have been wristband devices from Fitbit, Garmin, and the Apple watch.

Researchers in other fields have been testing the viability of sensors in other diseases for a few years now, but we are really only just seeing them start to scratch the surface for use in Huntington’s disease research. Observational studies have provided the proving grounds for them, but they haven’t yet been included as a key clinical trial aim until the KINECT-HD study of valbenazine for HD chorea. In that study, a secondary aim with a subset of study participants is to “evaluate the ability of wearable movement sensors to detect changes in physical activity.”

In other instances, the connection for HD clinical trials to the digital evolution has followed in lockstep without us really even noticing the change. How, you ask? Two words that are now forever engrained in our vernacular: social media. There is almost no digital divide when it comes to social media and how it has become intertwined with social media. However, it is important to understand the ways in which social media is used for HD clinical trials, and how to best navigate the vast and endless streams of content that one can derive from those platforms.

The Benefits of Social Media

Social media is incredibly useful as a channel to recruit clinical trial participants from, or for sponsors and trial operators to convey general information about a study. However, patient-facing social media content is subject to the same regulatory requirements that printed marketing materials face. In the United States, content must be assessed and approved by an Independent Review Board (IRB), which applies strict standards intended to avoid coercion or false promises. This is a similar practice to those that the Ethics Committees (ECs) of other countries follow.

Keep in mind that all these safeguards are a good thing! Safety and informed decision making by any study participant are paramount. From a practical implementation standpoint, though, it can make a clinical trial’s social media campaign seem a little more stiff, repetitive, and dare we say, slightly less exciting compared to other advertising campaigns or interactions fueled by social media accounts. You just will not see ad hoc posts that interject or frame a clinical study on the immediate events of the day, nor should you see posts of a study positioning itself as a better option to other comparable trials or treatments (like, say Pepsi versus Coca-Cola, McDonald’s versus Burger King, etc.). The important thing here is that a social media campaign directs you to where you can get more detailed information about a study, be it a website (which also requires IRB approval of its content) or ultimately the study site itself, where an investigator will review the full informed consent in detail with you.

The Pitfalls of Social Media

As with many advancements in technology, some mistrust or misuse tends to follow. Social media is certainly not immune from this. What started in the mid-2000s as a way to connect with old and new friends to let them know what you were doing in that moment (“Am writing an article for HD Insights”) has quickly grown into an overcrowded sea of information that we must constantly parse out as it is fed to our personal feeds — is this important to me, is this interesting, is this true?

Because of its adoption rate around the world, social media has also given rise to fast and easy access to misinformation. Misinformation spreads fast for several reasons: it requires less effort (i.e. fact checking), it feeds our uncertainties and preys on our fears, and it can come from anyone — intentionally or unintentionally. Although unintentional, someone that you know as a person of good character — kind, and decent — could be just as prone to circulating misinformation on a topic as a bad faith actor may be of targeting an audience with intentional misinformation.

For example, most people in a workplace these days receive some sort of general training about how to recognize and what to do with suspected spam. Now think about the amount of spam email you receive through your personal email, and put yourself in the shoes of someone who hasn’t had that level of training or experience. Now imagine that person is taking to social media with that fictitious bit of information — again, maybe with the best of intentions to keep others safe — and you see just how quickly misinformation can multiply. Add in the intricate level of treatment put into these nefarious efforts, and each day gets harder than the last to easily spot the fake!

Lack of Information About a Trial — A Potential Incubator for Misinformation

It is human nature to draw possible conclusions based on a set of circumstances or available information. The more reliable information available, the more likely we are to infer the proper conclusion. It is when the information available to us is sparse or suspect that we tend to be our own worst enemies. Often, personal experience has taught us to hope for the best but expect the worst. In the absence of reliable information, we tend to the latter.

I’m reminded of a movie quote where the lead characters are trying to solve a mystery, and early on there is no explanation that can be ruled out, no matter how unlikely. It demonstrates that when we become desperate for an explanation, we begin to twist facts to fit theories, instead of using theories to fit facts. In HD clinical trials, there can often be long periods without new information that can make participants and the community anxious.

This anxiety can be further amplified when studies suffer setbacks, such as not meeting their desired end points or being stopped for safety or efficacy reasons. For a community that thrives on hope but requires urgency for disease-altering treatments, such setbacks are brutal for our collective morale. In the absence of new information or positive developments, it is easy to let our minds formulate the worst possible outcome and begin to believe it is inevitable.

Now let’s draw a parallel with the email example cited earlier. The widespread and easy access that social media platforms avail us of to also provide an outlet for anyone to express their anxieties or theories about a clinical trial to the world. This may be cathartic for the person posting or just some type of outreach to hear if others have better information. However, this can cause a lot of unintended damage to the HD clinical trial ecosystem, and by extension, an HD community desperate for new treatments.

Strategies for the HD Community… and Beyond

All this is not to say that the Huntington’s disease community is being bombarded with faulty information about clinical trials, or that information is being deliberately withheld about active studies. Rather, it provides context for other kinds of information that the HD community might encounter online and some helpful tactics to handle them. Knowing what to expect from a clinical trial, how to interpret what you are hearing (or not hearing) about a trial, and what you can do to manage your online expectations or anxieties can be incredibly helpful.



  1. Check, double-check, and triple-check the source!
    This is a good strategy no matter what the story or information is that you are reading and reacting to. Often, if it sounds too good or too awful to be true, then it probably is not accurate. Who is the source? Are they an individual or a news outlet? If it looks like a news outlet, is it one you’ve heard of before and what are their journalistic standards? Keep in mind, a lot of fringe “news” sources create names and branding to make them look official or closely resemble a news outlet you know to be reputable. As a general rule, try to verify the information through at least two different sources.
  2. Be aware of the constraints that Pharmaceutical & Biotech trial sponsors operate within.
    Many major companies that develop new treatments, though not all, are publicly traded companies. This means that that in addition to FDA or Ethics Committee standards for clinical trials, they are also subject to public finance, accounting, and disclosure laws. As such, they are typically required to report major news to their shareholders or governmental agencies first, before they can inform clinical trial staff or participants. If the timing is not well- and precisely coordinated, study participants may see outcomes on the news before they hear from the study itself. While not intentional, this can certainly create bad feelings from participants and the community.
  3. Understand a clinical trial for what it is, not what everyone hopes it to be.

    A clinical trial is a carefully planned test of a treatment to ensure that it is safe, effective, and tolerable before it is made publicly available to anyone. It is truly important to be fully aware of this and embrace that before participating in a clinical trial. This can be difficult for participants in the HD community to embrace, given their urgent desire to prevent symptom onset or worsening of symptoms. There may be an underlying belief that “this treatment may be the cure and I am willing to take the chance” to try and get it as part of a clinical trial. There are so many other considerations or risks regarding clinical trials that a participant needs to acknowledge — you may end up on placebo, it may cause side effects, it may prevent you from qualifying for other trials or treatments in the future. All of which leads us to…

  4. Speak with an Investigator or Coordinator, not your group chat.

    The best source for making informed decisions when it comes to a clinical trial is with the team actually conducting it. A clinical investigator and clinical coordinator are going to have intimate knowledge about the study and about your condition that they bring to the conversation. In fact, it will be with this team that participants go through the Informed Consent Form (ICF) in detail before agreeing to participate. Sure, you may have friends in a private Facebook group that have participated in clinical trials or even the same clinical trial. Just remember that their experience is their own, just as your experience is your own.

  5. When you’re searching for bad news, you’re likely to find it.

    Avoid online search criteria that will inherently skew the search results. For example, even if you assume something is not going well with a clinical trial, searching “Clinical Trial ABC failure” is only going to return dubious results such as message board postings or untrustworthy sources. To avoid your own confirmation bias, instead search on just “Clinical Trial ABC” or by the sponsor’s name using a search engine like Google, then go to the News tab under results. The most current publicized news related to that item will typically appear first, and generally from trustworthy sources.

  6. Don’t engage with Twitter eggs.

    Remember a few years ago, when a Twitter account appeared that was literally a picture of an egg? For some reason, it went viral by literally doing nothing. Twitter eggs is now a more friendly term for accounts that post or respond to posts simply to initiate some response or reaction. In fact, there is no shortage of automated bots posting across the social media landscapes on various topics that are nearly indistinguishable from an actual human being. The tip here is to simply avoid engaging with posts or comments that make you upset, defensive, or angry. These accounts are empowered by their artificial intelligence or their anonymity, and engagement means their reach can quickly multiply. Don’t give them any more fuel than they deserve.

  7. Keep your details to yourself.

    While this is true about your role in a clinical trial, it is just as important for general internet safety. Sharing details about yourself and a clinical trial online can adversely impact a clinical trial — from biasing the outcomes to potentially having the study terminated. However, it can also be fertile ground for hackers and identity thieves looking to find a target. The simplest rule is don’t share this information. Ask yourself, does it really matter that some total strangers know these facts about me? But if you feel obligated to contribute, say to encourage others to consider participating in clinical trials or studies, then be generic about yourself. Avoid specific details that can be pieced together to put a study at risk or your personal data.

  8. No news does not mean bad news.

    There are two to three primary reasons you may go weeks, months, or longer without hearing anything newsworthy from a clinical trial. The first is the aforementioned constraints of publicly held companies. The second is the simple reality that information about how the trial is proceeding could inadvertently influence or bias the outcome — mostly from impacting decisions participants make that could adversely impact recruitment or retention on a study. Finally, the way in which clinical trials are designed, results are not analyzed until the completion of the study period. Again, this is to avoid potentially biasing the study outcomes.

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