Investigating the concept of participant burden in aging technology research

BACKGROUND: Research 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. METHODS: We 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. RESULTS: Older 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. CONCLUSIONS: Results 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.