Patient and researcher stakeholder preferences for use of electronic health record data: a qualitative study to guide the design and development of a platform to honor patient preferences.
Brad MorseKatherine K KimZixuan XuCynthia G MatsumotoLisa M SchillingLucila Ohno-MachadoSelene S MakMichelle Sophie KellerPublished in: Journal of the American Medical Informatics Association : JAMIA (2023)
A research consent and data-sharing platform must consider two competing goals: empowering patients to have more control over their data and maintaining the integrity of secondary data sources. Health systems and researchers should increase trust-building efforts with patients to engender trust in data access and use.
Keyphrases
- electronic health record
- end stage renal disease
- big data
- newly diagnosed
- ejection fraction
- clinical decision support
- chronic kidney disease
- case report
- prognostic factors
- peritoneal dialysis
- patient reported outcomes
- health information
- drinking water
- high throughput
- data analysis
- healthcare
- social media
- deep learning