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. 2021 Sep 8;5(9):e29123.
doi: 10.2196/29123.

Electronic Video Consent to Power Precision Health Research: A Pilot Cohort Study

Arash Naeim #  1 , Sarah Dry #  2 , David Elashoff  2 , Zhuoer Xie  3 , Antonia Petruse  4 , Clara Magyar  2 , Liliana Johansen  4 , Gabriela Werre  4 , Clara Lajonchere  5 , Neil Wenger  2
Affiliations

Electronic Video Consent to Power Precision Health Research: A Pilot Cohort Study

Arash Naeim et al. JMIR Form Res. .

Erratum in

Abstract

Background: Developing innovative, efficient, and institutionally scalable biospecimen consent for remnant tissue that meets the National Institutes of Health consent guidelines for genomic and molecular analysis is essential for precision medicine efforts in cancer.

Objective: This study aims to pilot-test an electronic video consent that individuals could complete largely on their own.

Methods: The University of California, Los Angeles developed a video consenting approach designed to be comprehensive yet fast (around 5 minutes) for providing universal consent for remnant biospecimen collection for research. The approach was piloted in 175 patients who were coming in for routine services in laboratory medicine, radiology, oncology, and hospital admissions. The pilot yielded 164 completed postconsent surveys. The pilot assessed the usefulness, ease, and trustworthiness of the video consent. In addition, we explored drivers for opting in or opting out.

Results: The pilot demonstrated that the electronic video consent was well received by patients, with high scores for usefulness, ease, and trustworthiness even among patients that opted out of participation. The revised more animated video pilot test in phase 2 was better received in terms of ease of use (P=.005) and the ability to understand the information (P<.001). There were significant differences between those who opted in and opted out in their beliefs concerning the usefulness of tissue, trusting researchers, the importance of contributing to science, and privacy risk (P<.001). The results showed that "I trust researchers to use leftover biological specimens to promote the public's health" and "Sharing a biological sample for research is safe because of the privacy protections in place" discriminated opt-in statuses were the strongest predictors (both areas under the curve were 0.88). Privacy concerns seemed universal in individuals who opted out.

Conclusions: Efforts to better educate the community may be needed to help overcome some of the barriers in engaging individuals to participate in precision health initiatives.

Keywords: barrier; biobanking; cancer; consent; education; efficient; electronic consent; engagement; innovation; participation; pilot study; precision; precision medicine; privacy; video.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Pilot-testing electronic universal consent (EUC).
Figure 2
Figure 2
Electronic universal consent flow and representative screenshots.
See this image and copyright information in PMC

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