Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study.
Andreas HagerStaffan LindbladMats BrommelsStina SalomonssonCarolina WannhedenPublished in: Journal of medical Internet research (2021)
Health information exchanges for sharing patient-controlled real-world data are pivotal to enable patients, health care professionals, health care funders, researchers, authorities, and the industry to coproduce high-quality care and to introduce and follow-up novel health technologies. Our model proposes how technical and legal structures that protect the integrity and self-determination of patients can be implemented, which may be applicable in other chronic care settings as well.
Keyphrases
- healthcare
- health information
- end stage renal disease
- ejection fraction
- social media
- newly diagnosed
- chronic kidney disease
- public health
- palliative care
- prognostic factors
- case report
- electronic health record
- big data
- patient reported outcomes
- artificial intelligence
- risk assessment
- quality improvement
- pain management
- data analysis
- solid phase extraction