Oh that Facebook…Can social media be used for clinical trial recruitment?

Social Media is all a buzz right now and everyone from industry giants, mom and pop shops, non-profit community organizations, and even the U.S government are trying to figure out how to use it to their advantage. Some organizations find social media platforms wildly successful, while others can’t quite hit their mark. Just days before Facebook opened on NASDAQ, General Motors Co. decided to stop their advertising on Facebook. Were their ads ineffective, or was GM not correctly seeing the potential power of the social network to build brand loyalty? Should we care?

For many organizations that are looking for quick short-term returns on their investment dollars in the pay-per-click advertising might be disappointed with the results. As the article points out, the value of the social media user is that they become an advocate of the brand. Many are wondering if this is a sign of things to come for the advertising in the Facebook social media world; since it remains to be seen whether this virtual user engagement correlates with a return on investment (ROI). Is it possible to accurately define or measure ROI in social media?

One of the great powers of social media is creating a community and buzz through social connectedness—a virtual word of mouth system. Your social reach is indicative of a classic Wayne’s World 2 scene, “You know how these things start… one guy tells another guy something, then he tells two friends, and they tell two friends, and they tell their friends, and so on”.  If you witness a friend “like” a page or event, they are giving their social network a thumbs-up that they interested in a particular company, product, event, etc.—hey, and you might too. Conceivably your “friends” are more likely to share similar interests…or least be curious enough to check it out.

But how can this be applied to academic and clinical research realm—and should it? By creating a community around a specific disease or research area, you can create a group who has common interests and build loyalty within that group—that is if you can foster trust among your group members as a credible, reliable and useful resource. For instance, if you are a group member or follower of a specific group related to diabetes treatments and you see a fellow member of that group “likes” a diabetes clinical trial, then you might be more inclined to also check out that clinical trial.

The use of social media in clinical trial recruitment is a tricky area that still is trying to find guidance. In recent blog post by Rebar Interactive, brings this issue to light and raises  A Social Media Question IRBs Must Ask about how to appropriately use the power of social media to raise awareness of clinical trial opportunities; all the while, being mindful of patient privacy. This can be counterproductive in a virtual environment and age where absolute privacy may be disintegrating, with each allow access button we click.

The FDA still has not released official regulation on what is/isn’t allowed in recruitment via social media mediums. As a result, social media for clinical trial recruitment is such a gray area which is constantly evolving in its application. Although times are changing, IRBs shy away from encouraging the use of social media in patient recruitment because of the uncertainty in how to regulate it. In the meantime, you don’t want to be left outside the social circle, so here is a helpful resource to help navigate the unregulated waters: Patient Recruitment, Regulatory & IRB Considerations for Social Media

3 thoughts on “Oh that Facebook…Can social media be used for clinical trial recruitment?

  1. What Facebook offers, which other online advertising platforms can’t, is real demographic targeting across a wide audience. Radio and newspaper ads are fuzzy. Google ads can be linked to topics and keywords, but restricted only by geography. Facebook ads, on the other hand, can be sliced and diced by geography, gender, age, and interests. Once you know you can reliably reach Hispanic women ages 30-40 in Oakland, it’s hard to give up that level of precision and go back to a placement and a prayer.

    My biggest issue with social media outreach being done by specific studies is just that—they’re focused only on that one given study. There’s typically been no way for studies to build on the outreach work of prior studies, or to link up with other health-related outreach (e.g. bone marrow donation).

  2. Patients Like Me (patientslikeme.com) has been doing this for a while. Not necessarily to recruit for clinical trials, but to bring patients with similar stories together. For the patients, it’s an invaluable resource and for clinicians it’s an invaluable tool.

  3. @Anirvan – totally agree. One of huge gaps with using social media for study-specific purpose is that it is so limited to “stay in this box”. And then because we are being careful in what we say, it comes across to the user that you are pushing an agenda. And due to the limitations by IRBs about what you can say in clinical trial recruitment, you can end up sounding like a broken record, just repeating the “approved” recruitment language. Who is interested in that?
    I think it’s probably more effective if you create a page that is more general to a disease research area, say, Asthma Research at UCSF, and then you are not limited to promoting one specific trial but other asthma related topics that might fit in the category, as well. If you provide links to general resources for asthma research at FDA or CDC–topics that are public knowledge, you don’t need to get IRB approval. You are just offering educational links that the members might be useful or interesting. Then fold in information about the clinical trial, every 5-10 posts. Or as you suggest, post other trials as well. It shouldn’t be a competition for enrollment, it should be about informing the patient that these opportunities and resources exist and if you are interested in clinical trials then here are some options that might work for you. I think it’s good to be mindful of the 80/20 rule. 80% of your info is valuable to your followers, and no more than 20% is promotional.
    @Dave, PatientsLikeMe is a great organization which really taps into fostering the community aspect of social media in disease specific areas. It a huge resource for particular diseases such as MS or fibromyalgia, where they have 20,000+ members. That’s incredible! Sparse in other areas…but it’s getting there. I do really love how you can search by “what you have” and can see how many members there are like you. We’ve explored using them for local/regional specific outreach and the impact becomes much smaller.

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