Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study.

Karen Spencer Caroline Sanders Edgar A Whitley David Lund Jane Kaye William Gregory Dixon

Published in: Journal of medical Internet research (2016)

Patients from a range of socioeconomic backgrounds viewed a digital system for Dynamic Consent positively, in particular, feedback about data recipients and research results. Implementation of a digital Dynamic Consent system would require careful interface design and would need to be located within a robust data infrastructure; it has the potential to improve trust and engagement in electronic medical record research.

Keyphrases

electronic health record
end stage renal disease
healthcare
health information
big data
ejection fraction
chronic kidney disease
public health
newly diagnosed
primary care
mental health
prognostic factors
case report
peritoneal dialysis
quality improvement
risk assessment
kidney transplantation