Perceptions of Patient-Reported Outcome Data Access and Sharing among Patients with Heart Failure: Ethical Implications for Research.

Sabrina MangalStephanie Niño de RiveraMeghan Reading TurchioeAnnie MyersNatalie C Benda Parag GoyalLydia DugdaleRuth Masterson Creber

Published in: European journal of cardiovascular nursing (2023)

Our interviews with HF patients highlight opportunities for researchers to return and share data through an ethical lens, by ensuring privacy and transparency with intentions of data use, returning collected data in comprehensible formats, and meeting individual expectations for data sharing.

Keyphrases

electronic health record
big data
patient reported outcomes
healthcare
health information
end stage renal disease
chronic kidney disease
heart failure
social media
newly diagnosed
data analysis
decision making