US residents' preferences for sharing of electronic health record and genetic information: a discrete choice experiment.

Abram L WagnerFelicia ZhangKerry A RyanEric XingPaige NongSharon L R KardiaJodyn Platt

Published in: Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research (2023)

Hospital systems and regulatory bodies should consider patient preferences for sharing of personal medical records or genetic information. For both genetic and EHR information, patients strongly prefer their data to be de-identified and to have the choice to opt out of sharing information with commercial companies.

Keyphrases

electronic health record
health information
social media
healthcare
genome wide
end stage renal disease
adverse drug
decision making
newly diagnosed
ejection fraction
copy number
chronic kidney disease
emergency department
case report
patient reported outcomes