Electronic Video Consent to Power Precision Health Research: A Pilot Cohort Study.
barrier
biobanking
cancer
consent
education
efficient
electronic consent
engagement
innovation
participation
pilot study
precision
precision medicine
privacy
video
Journal
JMIR formative research
ISSN: 2561-326X
Titre abrégé: JMIR Form Res
Pays: Canada
ID NLM: 101726394
Informations de publication
Date de publication:
08 09 2021
08 09 2021
Historique:
received:
26
03
2021
accepted:
31
05
2021
revised:
26
04
2021
pubmed:
28
7
2021
medline:
28
7
2021
entrez:
27
7
2021
Statut:
epublish
Résumé
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. This study aims to pilot-test an electronic video consent that individuals could complete largely on their own. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 34313247
pii: v5i9e29123
doi: 10.2196/29123
pmc: PMC8459215
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e29123Subventions
Organisme : NCATS NIH HHS
ID : UL1 TR001881
Pays : United States
Commentaires et corrections
Type : ErratumIn
Informations de copyright
©Arash Naeim, Sarah Dry, David Elashoff, Zhuoer Xie, Antonia Petruse, Clara Magyar, Lilliana Johansen, Gabriela Werre, Clara Lajonchere, Neil Wenger. Originally published in JMIR Formative Research (https://formative.jmir.org), 08.09.2021.
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