Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jun 9, 2021
Date Accepted: Sep 18, 2021
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
An Integrated, Electronic Video Consent to Power Precision Health Research: A validation study of scalability
ABSTRACT
Background:
Consenting patients so that remnant clinical tissue and clinical data is essential to advance precision medicine.
Objective:
To validate that an electronic video consent can be operational and scaled to a large population of patients.
Methods:
UCLA implemented an innovative electronic video consent as the primary recruitment tool for precision health research. The consent targeted patients 18 years and older across ambulatory, clinical laboratories, and perioperative/hospital settings. Each of these major areas had slightly different workflows and patient populations. Sociodemographic Information, comorbidity, health utilization data (ambulatory visits, emergency room, and hospital admissions), and consent decisions were collected.
Results:
The consenting approach proved scalable with over 40,000 participants completing the consent process over 2 years at a rate of 800-1000 patients per week. Participants were representative of the adult UCLA Health population. The opt-in rate was high in the perioperative and ambulatory workflows (73.3% and 68.1% respectively), but slightly lower in the laboratory medicine workflow (52.7%). Those with higher medical acuity were more likely to consent. Multivariate analyses showed that African American (OR 0.72, p<.0001), Asian (OR 0.53, p<0.001), and multiple race populations (OR 0.73, p<0.001) were less likely to to participate compared to white/Caucasian individuals.
Conclusions:
This is one of the few large-scale electronic video-based consent implementation programs that reports a 66.5% 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 informed consent rates (50%), respectively. This study demonstrates a scalable recruitment approach for population health research.
Citation
