Social Media for Patient Recruitment: 3 Major Options

To be on social media. Or not to be on social media. That is the patient recruitment question.

Or at the least that’s the question many in clinical research are asking. And it’s not a bad question. But asking such a question does tend to obscure some of the nuances involved.

Social media is not all or nothing.

It can take many forms and levels of engagement. Without an understanding of these nuances, you’re going to have a hard time finding an answer to such a question.

With that in mind, we’re going to talk about the three major options you have with regard to social media and clinical trial recruitment. I’m going to be painting all of this with a very broad brush. But after this discussion, you will be prepared to start pondering a more productive question.

Might one or more of these social media options be right for me?

(If you are looking for more nuance than I discuss here, you’re in luck. I wrote an article for International Clinical Trials that provides an overview of a social media feasibility model for use in clinical trial recruitment. The article will be published in August. I’ll be sending out a link to the article via my newsletter, which you can sign up for here.)

Patient Recruitment Option #1: Listen

Want a no strings attached relationship with social media? This option is for you.

Most of the time when people (including myself) talk about social media for clinical trial recruitment, they are talking about a social media presence. But you need not have any presence whatsoever to find value in social media.

Listening can be very powerful.

And it allows you to become more familiar with social media while avoiding some of the regulatory and other challenges I’ve discussed previously. Listening is appropriate for most projects, as opposed to a social media presence, which requires a more careful feasibility assessment.

Listen First, Talk Later

In fact, you shouldn’t truly consider your other social media options until you have spent some time listening first. Such listening may only be informal in nature, but it needs to happen.

Understand how your audience is using social media. Become familiar with the social conventions of the platforms they are using. Those who take this step before establishing a presence are much more successful than those who immediately pull out the megaphone.

What Is Social Media Listening?

Social media listening is exactly what it sounds like. In essence, you monitor what social media users are saying. Beyond that basic description, it can take many forms.

Here are some example uses for listening:

• Listen informally to get a gut sense about your audience.
• Approach listening like formal market research to inform protocol feasibility, patient recruitment, and other elements of trial planning.
• Listen for mentions of your clinical trial to determine patient sentiment on various aspects of that trial.
• Listen for patient discussions that might undermine the scientific validity of the trial.

Data can be captured and analyzed in a variety of ways as well. You can collect data in a quantitative as well as a qualitative fashion. You can invest nothing in tools, invest in sophisticated enterprise software, or find a comfortable spot somewhere in the middle.

Listening is where you should start your social media journey. And it’s something you should continue to do no matter where that journey takes you.

Commitment: None to Low
Engagement: None
Timeline: Any

Patient Recruitment Option #2: Borrow

Ready to move to the next stage of your relationship with social media but not ready to commit long term?

There is a middle ground. You can “borrow” the social media presence of others.

To get the full value of social media, you need to have a long term presence. But for a variety of reasons, a long term presence is not always ideal in clinical trial recruitment. In that case, you’ll want to seek out others who have built an audience that matches your ideal patient (or caregiver) profile.

If you elect to go this route, it’s imperative that you do some informal listening first.

Learn the culture and the etiquette of the community. Know who the owners and/or moderators are. Take note of any rules or policies that have been established. Determine what sort of preexisting conceptions the community may have about clinical research. Be very sensitive and respectful in how you approach that community.

Proceed with caution here. You must have a deep appreciation for the nuances of social media and the limits of appropriateness within individual communities. I can’t give much direction beyond that because every situation is different. But I will say this. Do not enter a community and start bombaring people with clinical trials messages. That is not the way to win friends and recruit patients.

To provide you an example of the options available to you in this category, I’m going to highlight a few communities.

Popular Patient Communities for Clinical Trial Recruitment

Inspire is an online patient-centric forum devoted to a variety of health topics. They also have partnerships with many health advocacy groups. If you are familiar with Mayo Clinic’s SCAD study, you might remember that Inspire is the website Mayo used to recruit patients.

Another interesting community is Patients Like Me. As with Inspire, Patients Like Me has a forum for patients to connect. Patients Like Me is unique in that it is heavily data-centered, aggregating lots of self-reported patient information. And it also has a clinical trial search engine available for members.

Both of these communities have patient recruitment services tailored and marketed specifically to clinical researchers. For this reason, they are the most well known in our industry.

Do Your Research To Find Hidden Gems

But there are many other great patient communities that are not as visible. And some of these communities may be the perfect fit for your trial. Here’s an example of one of these wonderful communities.

Cysticfibrosis.com boasts a very active and engaged group of cystic fibrosis patients. The owner of the site, Jeanne Barnett, started cysticfibrosis.com in the late 90s and has developed a great community over the years. In fact, Jeanne’s work garnered her a patient centricity award from Pharma Phorum.

(As an aside, cysticfibrosis.com illustrates the fact that social media is not really new. The specific terminology and technology have advanced in recent years. But people have been using Internet forums and other means to interact online for decades.)

The examples I’ve used are niche health social sites. But you can find good opportunities on mainstream social sites as well.

You have many choices here. Do your research. Not only do you want to take time to understand the community, you need to pick the right community for your needs.

Commitment: Low to Medium
Engagement: Low to Medium
Timeline: Shorter term

Patient Recruitment Option #3: Build

So you’ve been thinking about getting really serious with social media. And you’ve decided you’re ready to put a ring on it . (<-- Go ahead, click the link. Don’t mind the preroll ad. Think of it as super duper important patient recruitment research. By the way, this video is also a great study in masterful use of whitespace and the rule of three as powerful visual elements.)

This final option requires the greatest commitment. It is a social media presence that you build and own.

Within this option, you have two sub-options in terms of a timeline. Option one is to build and maintain your social presence for a designated period (like the length of a protocol). Option two is to plan for forever.

I hesitate to even mention the first of these sub-options, however. Here’s why.

The Magic of Social Media

Social media’s greatest strength is an ability that paid marketing mediums like advertising will never match. In essence, it can cultivate an audience that knows, likes, and trusts you. Certainly, this ability is something we desperately need in clinical research.

But there’s a catch.

To truly harness social media’s strength, you need to commit long-term to a social media presence.

Social media is a lot like compound interest. You start out with your principal, and then you create interest on that principal. That interest creates interest and so on. Eventually, your social media presence starts to work for you rather than you working for it. And your social media presence appreciates the longer you have it.

Can you create a social media presence only to abandon it 6 months or a year later? Sure. Might you still find some value and recruit some patients? Sure. But if you do this, recognize that you aren’t getting the full value out of social media.

To be clear, I am not advocating that everyone go out and build a long term social media presence. For a variety of reasons, this route will not be possible or ideal in some cases. But when a long-term social media presence is a good fit, it’s the most powerful and rewarding route you can take.

Commitment: Medium to High
Engagement: Medium to High
Timeline: Longer term

Conclusion

Now that you understand your three main options, you’ll be in a position to have a more productive conversation about social media for patient recruitment. Note that these options are not mutually exclusive. You can pursue all of them at the same time. And if you are borrowing or building a social media presence, you most certainly should be listening as well.

I’m providing this handy cheatsheet for easy review of those options:

Note that the focus of this post is not socia media platforms. I merely give a few examples of social platforms for the purposes of illustration. That’s because analysis of social media as a patient recruitment tool should not begin with a discussion of platforms. Social media platforms are not a clinical trial recruitment strategy. Instead, the decision-making process should begin with assessment of your goals, constraints, and the audience you wish to reach.

Did this discussion help you understand your social media options for clinical trial recruitment? What would you like to add? Put your comments below!