Evidence map›Paper›PMID 34889741›Full record

ArticleJournal of medical Internet research2021

An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study.

Clara Lajonchere, Arash Naeim, Sarah Dry, Neil Wenger, David Elashoff, Sitaram Vangala, Antonia Petruse, Maryam Ariannejad, Clara Magyar, Liliana Johansen and 3 more

Abstract read
In one paragraph

Article in Journal of medical Internet research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
16citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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

16 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Clara Lajonchere *Institute for Precision Health, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-3190-4606
Arash Naeim *Center for SMART Health, Institute for Precision Health, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0001-6830-5933
Sarah DryDepartment of Pathology and Laboratory Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-1858-5225
Neil WengerDepartment of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-9884-3967
David ElashoffDepartment of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-5865-8580
Sitaram VangalaDepartment of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-8842-5702
Antonia PetruseEmbedded Clinical Research and Innovation Unit, Clinical and Translational Science Institute, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0003-2968-7750
Maryam AriannejadInstitute for Precision Health, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0001-9393-6956
Clara MagyarDepartment of Pathology and Laboratory Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0003-2261-0187
Liliana JohansenEmbedded Clinical Research and Innovation Unit, Clinical and Translational Science Institute, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-3838-085X
Gabriela WerreEmbedded Clinical Research and Innovation Unit, Clinical and Translational Science Institute, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0001-9656-3091
Maxwell KroloffDepartment of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0002-7027-3616
Daniel GeschwindInstitute for Precision Health, David Geffen School of Medicine at UCLA, Los Angeles, CA, United States.ORCID 0000-0003-2896-3450

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

backgroundObtaining explicit consent from patients to use their remnant biological samples and deidentified clinical data for research is essential for advancing precision medicine.

objectiveWe aimed to describe the operational implementation and scalability of an electronic universal consent process that was used to power an institutional precision health biobank across a large academic health system.

methodsThe University of California, Los Angeles, implemented the use of innovative electronic consent videos as the primary recruitment tool for precision health research. The consent videos targeted patients aged ≥18 years across ambulatory clinical laboratories, perioperative settings, and hospital settings. Each of these major areas had slightly different workflows and patient populations. Sociodemographic information, comorbidity data, health utilization data (ambulatory visits, emergency room visits, and hospital admissions), and consent decision data were collected.

resultsThe consenting approach proved scalable across 22 clinical sites (hospital and ambulatory settings). Over 40,000 participants completed the consent process at a rate of 800 to 1000 patients per week over a 2-year time period. Participants were representative of the adult University of California, Los Angeles, Health population. The opt-in rates in the perioperative (16,500/22,519, 73.3%) and ambulatory clinics (2308/3390, 68.1%) were higher than those in clinical laboratories (7506/14,235, 52.7%; P<.001). Patients with higher medical acuity were more likely to opt in. The multivariate analyses showed that African American (odds ratio [OR] 0.53, 95% CI 0.49-0.58; P<.001), Asian (OR 0.72, 95% CI 0.68-0.77; P<.001), and multiple-race populations (OR 0.73, 95% CI 0.69-0.77; P<.001) were less likely to participate than White individuals.

conclusionsThis is one of the few large-scale, electronic video-based consent implementation programs that reports a 65.5% (26,314/40,144) average overall opt-in rate across a large academic health system. This rate is higher than those previously reported for email (3.6%) and electronic biobank (50%) informed consent rates. This study demonstrates a scalable recruitment approach for population health research.

Indexed as

Laboratories, ClinicalPrecision MedicineAdolescentAdultCohort StudiesElectronicsHumansInformed Consentbiobankingclinical dataconsentdata collectioneHealthelectronic consentpatient privacypopulation healthprecision medicineprivacyrecruitmentresearchresearch methodsscalabilityvalidationvideo

Identifiers

PMID34889741
PMCPMC8701720

What OpenQuestion holds

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LicenceCC BY
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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.