TY  - JOUR
AU  - Lajonchere, Clara
AU  - Naeim, Arash
AU  - Dry, Sarah
AU  - Wenger, Neil
AU  - Elashoff, David
AU  - Vangala, Sitaram
AU  - Petruse, Antonia
AU  - Ariannejad, Maryam
AU  - Magyar, Clara
AU  - Johansen, Liliana
AU  - Werre, Gabriela
AU  - Kroloff, Maxwell
AU  - Geschwind, Daniel
PY  - 2021
DA  - 2021/12/8
TI  - An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study
JO  - J Med Internet Res
SP  - e31121
VL  - 23
IS  - 12
KW  - biobanking
KW  - precision medicine
KW  - electronic consent
KW  - privacy
KW  - consent
KW  - patient privacy
KW  - clinical data
KW  - eHealth
KW  - recruitment
KW  - population health
KW  - data collection
KW  - research methods
KW  - video
KW  - research
KW  - validation
KW  - scalability
AB  - Background: Obtaining explicit consent from patients to use their remnant biological samples and deidentified clinical data for research is essential for advancing precision medicine. Objective: We 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. Methods: The 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. Results: The 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. Conclusions: This 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. 
SN  - 1438-8871
UR  - https://www.jmir.org/2021/12/e31121
UR  - https://doi.org/10.2196/31121
UR  - http://www.ncbi.nlm.nih.gov/pubmed/34889741
DO  - 10.2196/31121
ID  - info:doi/10.2196/31121
ER  -