Evidence map›Paper›PMID 34313247›Full record

ArticleJMIR formative research2021

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

Arash Naeim, Sarah Dry, David Elashoff, Zhuoer Xie, Antonia Petruse, Clara Magyar, Liliana Johansen, Gabriela Werre, Clara Lajonchere, Neil Wenger

Erratum issuedOpen access · goldAbstract read
In one paragraph

Article in JMIR formative research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 13 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 2 pooled it
3.1field-weighted citation impact, top 9% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

13 citing papers in PubMed, 2 syntheses or guidelines pooled it, 21 citations in OpenAlex.

  1. Pooled it
  2. Comparative Effectiveness of eConsent: Systematic Review.Journal of medical Internet research · 2023
    Pooled it
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

10 authors at 4 institutions in 1 country.

Arash Naeim *UCLA Center for SMART Health, Clinical and Translational Science Institute, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0001-6830-5933
Sarah Dry *David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-1858-5225
David ElashoffDavid Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-5865-8580
Zhuoer XieMayo Clinic, Rochester, MN, United States.ORCID 0000-0003-1266-9804
Antonia PetruseEmbedded Clinical Research and Innovation Unit, CTSI Office of Clinical Research, Los Angeles, CA, USORCID 0000-0003-2968-7750
Clara MagyarDavid Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0003-2261-0187
Liliana JohansenEmbedded Clinical Research and Innovation Unit, CTSI Office of Clinical Research, Los Angeles, CA, USORCID 0000-0002-3838-085X
Gabriela WerreEmbedded Clinical Research and Innovation Unit, CTSI Office of Clinical Research, Los Angeles, CA, USORCID 0000-0001-9656-3091
Clara LajonchereInstitute for Precision Health, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-3190-4606
Neil WengerDavid Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-9884-3967
University of California, Los Angeles · USInnovative Clinical Research · USMayo Clinic in Arizona · USSouthern California Clinical and Translational Science Institute · US

Funding

UCLA Clinical Translational Science InstituteUL1TR001881 · NCATS · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI ARLEEN F. BROWN, ARASH NAEIM · 2016 to 2026
$118.1M
NCATS NIH HHS UL1 TR001881
6 · The paper itself

Abstract

backgroundDeveloping 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.

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

methodsThe 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.

resultsThe 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.

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

Indexed as

barrierbiobankingcancerconsenteducationefficientelectronic consentengagementinnovationparticipationpilot studyprecisionprecision medicineprivacyvideo

Identifiers

PMID34313247
PMCPMC8459215
OpenAlexW3168387199

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.