Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research.
Cláudia De FreitasMariana AmorimHelena MachadoElisa Leão TelesMaria João BaptistaAlicia RenedoVeerle ProvoostSusana SilvaPublished in: BMJ open (2021)
The Ethics Committee for Health from the University Hospital Centre São João/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.
Keyphrases
- healthcare
- public health
- mental health
- study protocol
- randomized controlled trial
- big data
- health information
- case report
- global health
- quality improvement
- electronic health record
- clinical trial
- palliative care
- social media
- primary care
- medical students
- artificial intelligence
- health insurance
- health promotion
- drug induced
- data analysis
- climate change
- human health
- drug administration