Based on statistics recorded in 2019 by the Canadian Internet Registration Authority, 60% of Canadians report to use social media platforms. The term ‘social media’ encompasses internet and electronic based communication enabling individuals to connect on a local and global scale for a variety of purposes. Some of the most common include Facebook, Twitter, and Instagram.

Recently, the idea of utilizing social media in clinical trials as a tool to mitigate common problems such as patient involvement and self-tracking has been brought forward. This has promoted the idea of the creation and development of clinical-trial specific apps. With that being said, it is important to acknowledge the advantages and disadvantages of utilizing social media in clinical trials to maintain an ethical standard.

Patient Involvement

Patient Recruitment. A common problem with clinical trial progression includes lack of recruitment. In order to recruit patients for clinical trials, researchers can perform passive and active strategies, both offline and online. Passive recruitment methods can include posting of flyers and handing out of brochures – allowing interested participants to contact the researcher. In comparison, active recruitment measures involve the researcher to reach out to target audiences directly with the purpose of enrolling them, for example through email.

In a self-reported study conducted in 125 patients at Trinitas Comprehensive Cancer Center (TCCC), 64% reported to be unaware of the TCCC clinical trials, 85% of patients did not know about clinical trials, and 77% reported to have never received a brochure about current TCCC clinical trials. A main finding of this study was the identification of a communication barrier between cancer patients and researchers regarding trials, which can contribute to lack of patient involvement. Therefore, traditional methods of communication can be contributing to the lack of recruitment. Social media can potentially aid in communication allowing for researchers to increase their outreach capacity by having direct contact with potentially eligible patients.

Lack of recruitment can also be due to the rarity of the disease type, such as rare diseases known as orphan diseases. Social media could be a useful outreach tool for rare disease patients due to their dispersed and low prevalence – allowing patients and doctors to connect for orphan drug trials more easily.

An example of patient recruitment using social media includes using Facebook advertisements. A study conducted an 8-week Facebook advertising campaign to recruit healthy elderly patients for a study, resulting in over 800 individuals responding to the advertisement.

Patient and Public Awareness. Social media can also provide individuals and researchers with empowerment to advocate and educate others regarding disease-specific clinical trial development. For example, one study focusing on using social media to spread Parkinson’s Disease (PD) clinical trial awareness recommends for websites and sponsors to implement Twitter campaigns as one of many effective ways to potentially increase PD clinical trial awareness.

Self-Tracking. Mobile devices can allow individuals to collect self-recorded quantitative (e.g. blood pressure) and qualitative data (e.g. mood) during the clinical trial that can be subsequently shared to patient online communities on social media platforms. This can not only provide a supportive environment for the individuals within the trials for the same disease and trial, but also provide researchers with real-time data and insight into benefits and problems with the treatment provided.

Available Apps

Twitter. The social media platform Twitter can be used to track discussions regarding clinical trials for specific diseases by using hashtags. An example of this includes, #bcsm thread which can be used to follow conversation about breast cancer updates. This allows individuals on a global scale to access this information.

Online Patient Communities. Individuals suffering or interested in the same disease can create online forums whether on social media platforms such as Facebook, or through specific forum websites. For example, patients in an online forum for Spontaneous Coronary Artery Dissection (SCAD) developed research ideas and were able to connect with a cardiologist at the Mayo Clinic who engaged with these patients. This example really highlights the promise of social media in promoting patient self-advocacy in clinical trial development.

Clinical Trial Apps. The innovation of technology in health care goes beyond the use of social networking platforms (such as Facebook and Twitter), as app developers have created mobile applications specifically for clinical trials. For example, ‘SCI Cancer Clinical Trials’ by Stanford University enables patients to browse trials based on eligibility conditions and communicate directly to the Cancer Clinical Trials Office.

Ethical Considerations & Confidentiality

While it may have benefits, the use of social media in clinical trials also has its shortcomings. Using social media can be a cause for a breach of patient confidentiality during the clinical trial, which is unethical. Social media users can be both anonymous and identifiable. Therefore, it is important for the participants, drug developers, and researchers to consider de-identification of results and updates. In terms of orphan drug development trials some disadvantages of social media use can include maintaining blinding of patients within the treatment and placebo groups, ensuring validity of results, and maintaining data security.

The concept of bridging social media and clinical research is one that would promote overcoming barriers to the progression of trials. It is important to acknowledge the disadvantages of the use of this technology in clinical trials in order to ensure ethical standards and equality in outreach are met.  However, to focus solely on the barriers of social media disregards its potential to further develop clinical trials in terms of patient involvement, self-tracking, and the progressing innovation of available apps.

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Christina Ditlof

Christina is a Master of Science student in the Department of Immunology at the University of Toronto, with a research focus in childhood food allergy.
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