Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.
Cláudia De FreitasVanessa Dos ReisSusana SilvaPaula A VideiraEva MoravaJaak JaekenPublished in: BMC health services research (2017)
This is one of the few studies to engage lay and professional experts in needs assessment and innovation for CDG at a global level. Implementing the innovations proposed by the CDG community is likely to have ethical, legal and social implications associated with the potential donation of patients' clinical and biological material that need to be assessed and regulated with involvement from all stakeholders. To promote people-centred care for the CDG community, and increase its participation in the governance of care and research, it is necessary to create participatory spaces in which the views of people affected by CDG can be fully expressed.
Keyphrases
- healthcare
- mental health
- quality improvement
- palliative care
- end stage renal disease
- newly diagnosed
- ejection fraction
- pain management
- chronic kidney disease
- transcription factor
- prognostic factors
- peritoneal dialysis
- emergency department
- patient reported outcomes
- risk assessment
- chronic pain
- human health
- decision making
- patient reported