Research participants who discuss their research participation online may unintentionally disclose information that increases the risks of the research to themselves or others. These risks include unblinding study participants or the research team, communicating incorrect information, or inadvertently licensing participant behaviors that conflict with study requirements, each of which may potentially threaten study integrity and/or participant safety. For example, a research participant may share information online that permits another individual to “game” the eligibility criteria for a study and enroll in research that undermines the study quality and, importantly, may be unsafe for them.
Social media use, however, can also benefit research participants. Some of these benefits are informational, such as learning about research concepts, informing others about what research participation entails, notifying potential participants of trial opportunities, and sharing self-management strategies for handling the physical and emotional burdens of research participation. Other benefits are social and emotional, such as forming connections with others who understand the research participant experience and sharing the participant journey. Although empirical evidence is lacking, online communication initiated by research participants may also bolster study recruitment and retention: sharing general or trial-specific information may increase reach and therefore enrollment while the social and emotional support may prevent some individuals from leaving a study.
An ideal social media policy for research participants would minimize the risks to study integrity and participant safety while preserving the benefits. Since engendering potential harm through social media is generally unintentional, educating research participants on how to use social media safely and successfully is important. Towards this end, the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center), in close collaboration with patient advocates, produced a video, targeted towards research participants, to encourage online communication while describing the risks. This practical resource is narrated by Jamie Tyrone, a courageous and compelling patient, advocate, and spokesperson for participant centricity, engagement, and transparency.
The video is an outgrowth of a 2019 MRCT Center Bioethics Collaborative on the “Impact of Social Media on Clinical Trial Integrity,” during which patient advocates emphasized the benefits of social media use and argued that education was more likely to be effective than restrictive measures in promoting appropriate social media use. The video builds upon previous work. The script and storyboard for the video were developed in collaboration with Jamie Tyrone and Elizabeth Cahn, PhD, to whom we are indebted.
The Multi-Regional Clinical Trials Center at Brigham and Women’s Hospital and Harvard (MRCT Center) is a research and policy center created to address the conduct, oversight, ethics and regulatory environment of clinical trials, with a focus on multi-site, transnational clinical trials. The MRCT Center works by engaging and convening a diverse set of stakeholders from industry, academia, CROs, government and institutional regulatory bodies, patient and participant advocacy groups and others to identify challenges and deliver ethical, actionable, and practical solutions for the global clinical trial enterprise, with a focus on emerging economies. Over the past decade, the MRCT Center’s efforts have contributed to the implementation of best practices, increased transparency and safety for participants. The majority of the MRCT Center resources are freely available on their website.
Jamie Tyrone is a full-time advocate for Alzheimer’s research. She is an active member of several advisory groups and co-authored her award-winning book, Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s, with Marwan Sabbagh, MD. Jamie is a self-proclaimed “lab rat” and is most proud of her personal contribution to research.