Journal article
Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research
Abstract
PurposeThe collection and use of patient reported outcomes (PROs) in care-based child health research raises challenging ethical and logistical questions. This paper offers an analysis of two questions related to PROs in child health research: (1) Is it ethically obligatory, desirable or preferable to share PRO data collected for research with children, families, and health care providers? And if so, (2) What are the characteristics of a model …
Authors
Vanderhout S; Potter BK; Smith M; Butcher NJ; Vaters J; Chakraborty P; Adams J; Inbar-Feigenberg M; Offringa M; Speechley K
Journal
Quality of Life Research, Vol. 32, No. 8, pp. 2319–2328
Publisher
Springer Nature
Publication Date
August 2023
DOI
10.1007/s11136-023-03393-2
ISSN
0962-9343