US Residents’ Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment

• DOI: 10.1016/j.jval.2023.01.015
• Publication Date: 2023-02-01T01:41:14Z
• Authors: Abram L. Wagner; Felicia Zhang; Kerry A. Ryan; Eric Xing; Paige Nong; Sharon L.R. Kardia; Jodyn Platt
• Keywords: Information Sharing; Data Sharing; Odds

ObjectivesThe aim to this study was assess preferences for sharing of electronic health record (EHR) and genetic information separately examine whether there are different these 2 types information.MethodsUsing a population-based, nationally representative survey the United States, we conducted discrete choice experiment in which half subjects (N = 790) responded questions about other 751) EHR information. Conditional logistic regression models assessed relative across attribute levels where patients learn sharing, shared data deidentified, commercialized, how long biospecimens kept, what purpose is.ResultsIndividuals had strong share deidentified (vs identified) (odds ratio [OR] 3.26, 95% confidence interval 2.68-3.96) be able opt out with commercial companies (OR 4.26, 3.42-5.30). There were no significant differences regarding kept or why being shared. Individuals stronger preference opting 4.26) versus 2.64) (P .002).ConclusionsHospital systems regulatory bodies should consider patient personal medical records For both information, strongly prefer their have companies.