Building and Maintaining Researcher Participant Relationships in a Virtual World

In clinical research, traditional researcher - participant relationships are being re-envisioned due to the growing adoption of electronic approaches designed to engage, educate, and promote informed research decision making. One such example is electronic consent, which is increasingly being utilized in large-scale research where in-person consent is not feasible. Electronic consent approaches also provide participation opportunities to those traditionally underserved in clinical research. Developing a robust approach to education and trusting relationships between the research team and participants are just as vital in the digital space as in traditional, in-person decision making scenarios. However, what does it mean to have a relationship with a virtual representation of an investigator and/or a study team? Core components of relationships can remain the same but how these relationships are envisioned and operationalized and maintained need to be adapted. As such, placing a traditional written consent on an electronic screen will not maximize use of the technology, advance relationship building, nor best promote informed choice. Instead, electronic consent models can incorporate a range of approaches to present the required elements for informed consent, such as multimedia components including audio and video that ‘humanize’ the process. They can also incorporate decision support components such as values clarification and other deliberation activities to foster engagement. Trust in the information provided can be garnered through presenting information in a transparent and accessible manner related to uncertainty, risks, and benefits; through a high-quality user experience; by providing a ‘face’ to the research; and through allowing opportunities for prospective participants to interact with the study team as desired via telephone, email, and online chat functions. User-centered design that promotes alternative learning formats and low-literacy approaches can also increase trust and improve the relationship between the potential participant and the study.

In this symposium, RTI International and Sage Bionetworks will present electronic approaches currently being implemented for large-scale consent. The symposium will employ an interactive format that integrates our real-world examples through the lens of ethical, social, and legal implications. Group discussion will include methods used to build virtual relationships between the potential participants and the research team/study, how those methods have performed and measured, and deliberation about a research agenda to advance the ability of electronic consent to facilitate trust in research, increase access, and provide a robust alternative to in-person consent for clinical research.