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In March 2018, The Data Science to Patient Value (D2V) initiative at the University of Colorado Anschutz Medical Campus held an invitational symposium, convening 11 national leaders with expertise in various aspects of developing and using virtual platforms for engaging stakeholders in health research. Speakers included researchers, ethicists, representatives of virtual media platforms, and experts in stakeholder engagement methods.
Following an in-depth review of the current state of the field, our key findings were that: (1) virtual platforms hold the potential to reduce some barriers to effective engagement, including time, expense, and geographic distance; and (2) there is a strong trend towards the increasing use of virtual platforms for stakeholder-engaged research; yet (3) there have been very few studies on when and how best to use these virtual engagement methods. Though a number of potential harms can arise if these platforms are not used appropriately, only a few studies have formally assessed virtual engagement methods for potential benefits or pitfalls, and no recent trials have directly compared virtual and in-person engagement methods.
As more researchers turn to virtual platforms to engage participants and communities, we should be working together to ensure good evaluation of these uses, ideally using the methods of comparative effectiveness research.
These symposium proceedings should serve both as a resource and as a call to action. Researchers, funders, virtual platforms, EMR vendors and others need to come together to support and conduct evaluation and effectiveness research on when and how best to use virtual platforms to engage stakeholders in research.
Do you use or participate in stakeholder or community engagement in health research? Do you ever use “virtual” methods for engagement – such as social media or virtual chats? Please tell us about your experiences in this survey.