Abstract
BackgroundResearch participation burden, despite being an integral concept in research ethics, is not well-conceptualized in the context of the use of technology in research. This knowledge gap is especially critical for the older adult population as new technology solutions are increasingly embedded in clinical trials for this demographic. Our objective was to investigate how older adults conceptualize participation burden in contact for research participation and research trials using technology.MethodsWe developed and conducted an Internet-based survey consisting of 22 multiple choice and Likert-scale type questions investigating older adults’ preferred means and frequency of being contacted about research opportunities, their willingness to use specific kinds of technology and their concerns regarding technology use in clinical trials. We received a total of 273 completed surveys from eligible participants aged 50 or older.ResultsOlder adults preferred to be contacted about research opportunities monthly, over email. Survey participants were least willing to use monitoring devices and their biggest concern was the security of the storage of information gathered by technology. This concern was positively correlated with age. Participants indicated a preference to use technology daily, in short sessions, preferably in a way that can be incorporated into their daily routine.ConclusionsResults from this work provide insights for the design of effective recruitment campaigns as well as technology interventions in clinical trials through minimizing the burden of research participation.
Highlights
Research participation burden, despite being an integral concept in research ethics, is not wellconceptualized in the context of the use of technology in research
While this concept is promoted in research ethics education, including in key national efforts such as the National Institutes of Health training module on Human and Animal Subjects, its interpretation is likely to vary across different populations and circumstances and extend beyond direct risk to participants
Principal findings Our goal was to capture the attitudes of a sample of older adults about participation burden and preferences related to the use of technology in clinical trials
Summary
Despite being an integral concept in research ethics, is not wellconceptualized in the context of the use of technology in research. Research ethics guidelines state that investigators should aim to reduce the burden of research participation by ensuring that the benefits of research outweigh the risks and that the benefits and burdens of scientific research are distributed in the population [1] While this concept is promoted in research ethics education, including in key national efforts such as the National Institutes of Health training module on Human and Animal Subjects, its interpretation is likely to vary across different populations and circumstances and extend beyond direct risk to participants. Based on interviews with clinical trials’ participants, Ulrich and colleagues [2] identified categories describing the benefits and burdens of participation in research including physical, psychological, economic, familial and social dimensions Building on this emerging conceptual framework, Lingler et al [4] developed a tool
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