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

• Main Authors: Cláudia de Freitas (Author), Vanessa dos Reis (Author), Susana Silva (Author), Paula A. Videira (Author), Eva Morava (Author), Jaak Jaeken (Author)
• Format: Book
• Published: BMC, 2017-09-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Abstract Background Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can fos...