By Kristen Snipes

March 10, 2016 | Contributed Commentary | Social and digital media are important tools for reaching various patient populations. CROs are increasingly seeing the value of these mediums for recruiting patients and engaging with them during clinical studies. Social media can be more cost effective when compared to other advertising channels such as TV, newspaper, and radio ads because of its ability to more narrowly target an audience of interest.

Study teams are using social and digital media more frequently to identify potential clinical trial participants, provide study updates, and communicate the results of a study to patients. Various social media platforms can reach new target audiences and make current patients feel like they are involved with the clinical study process. However, there are several considerations that sponsors and CROs need to consider when using social and digital media to recruit and engage with clinical trial patients.  

Get Approval. Social and digital media may feel like an informal platform compared to traditional advertising. However, the same rules for gaining IRB approval apply. Depending on the type and format of social and digital media, you will need to consider how information is presented to an IRB. For Google AdWords, you will need to provide the text of the ad and a static view of the page that the ad is leading traffic to. For Facebook ads, you need to include the text, images, and links. Webpage ads require a visual of the page layout, text, and links provided to the subjects. Once you have IRB approval, make sure the study sponsor is on board with the information being shared during the recruitment process and how it will be shared. The information posted on Clinicaltrials.gov is a good starting point as it contains details that the sponsor is comfortable sharing externally.

Consider your audience. Just as it does not make sense to target millennials with print newspaper ads, social media may not reach an older population. Younger audiences typically use Twitter and Instagram, while Facebook, Google AdWords and trial websites will be best to reach 30-50 year-olds.

Take geography into account. Where will the clinical trial be located? If the site is in a remote area with limited internet access, social media adoption may be lower, and therefore less useful. It may also be difficult to reach low-income areas using social media as fewer people have access to digital devices. According to the Pew Research Center, approximately one third of people making $20,000 per year or less are not online. Another third access the internet through free resources, such as local libraries.

Work with patient advocacy groups. Patient advocacy groups often have a very active social media presence, with their own Facebook and Twitter pages, websites, and discussion boards. In particular, orphan indications have patient advocacy groups with potential study subjects who are very engaged. It is important for sponsors and CROs to build relationships with these organizations by informing them about the progress of a study and the outcomes. You can do this by sending press releases to post to the website and social media, provide links to sponsor information on studies, or send newsletters with upcoming clinical trials or completed studies.

Know your message. It is critical to accurately represent the trial information and risk factors. This may be difficult to do on platforms that have character limits, such as Twitter. To get around this, you can post a short message announcing the trial and link to another webpage that contains all of the trial information. Do not overstate what type of patients you’re looking for on social media, as this leaves room for potential subjects to falsify information.

Be cautious with patient information. Ask yourself what information you are collecting and how you will use it. Avoid collecting anything subject to HIPAA, and be careful that nothing subjects submit requires informed consent. Instead of soliciting information through a web form that is submitted to your site, you may want to direct patients to use a call center with appropriately trained personnel. This may seem inefficient, but it is critical to protect patient information at all times.

Know the regulations. The FDA has released several guidance documents that relate to social media use. You should familiarize yourself with these. Additionally, keep in mind that the same regulations that apply to other forms of patient recruitment like television ads and print media also apply to the use of social media. 

Not only does digital and social media help get your message in front of the right patient groups, but they can help patients feel more involved throughout the entire clinical trial process. Sponsors and CROs are still learning how to effectively use social and digital media to recruit and engage with patients, and the best practices for these mediums are constantly evolving. But with these considerations, study teams can ensure that they are providing the right information to patients, receive the correct approvals for their recruitment strategies and effectively reach their target audiences.

Kristen Snipes is a project director at Rho. She has over 15 years of pharmaceutical industry experience primarily as a program manager or clinical operations lead. Since joining Rho in 2007, she has been involved in leading and coordinating all operational activities for complex trials. She can be reached at info@rhoworld.com