Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.
Minakshi RajKerry A RyanPaige NongKaren CalhounM Grace TrinidadRaymond Gene De VriesMelissa S CrearyKayte Spector-BagdadySharon L R KardiaJodyn E PlattPublished in: JMIR cancer (2022)
The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.
Keyphrases
- health information
- healthcare
- social media
- end stage renal disease
- mental health
- public health
- case report
- ejection fraction
- newly diagnosed
- chronic kidney disease
- peritoneal dialysis
- clinical trial
- machine learning
- prognostic factors
- big data
- patient reported outcomes
- decision making
- health insurance
- data analysis
- health promotion