71. Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation

The article (by De Freitas, Dos Reis, Silva, Videira, Morava, Jaeken, 2017) describes an experience of need identification of people with Congenital Disorders of Glycosylation (CDG) to elicit social innovations and to promote people-centred care and research. The needs were collected by the implementation of focus groups involving patients, parents and providers, and professionals. The article contains tables summarizing the needs identified during the experience.

Part of interest: The entire article.

Target groups: Patients, CSOs, Professionals, Providers