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- Title
Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research.
- Authors
Vanderhout, Shelley; Potter, Beth K.; Smith, Maureen; Butcher, Nancy J.; Vaters, Jordan; Chakraborty, Pranesh; Adams, John; Inbar-Feigenberg, Michal; Offringa, Martin; Speechley, Kathy; Trakadis, Yannis; Binik, Ariella
- Abstract
Purpose: The 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 best suited to guide the collection, monitoring, and sharing of these data? Methods: A multidisciplinary team of researchers, providers, patient and family partners, and ethicists examined the literature and identified a need for focus on PRO sharing in pediatric care-based research. We constructed and analyzed three models for managing pediatric PRO data in care-based research, drawing on ethical principles, logistics, and opportunities to engage with children and families. Results: We argue that it is preferable to share pediatric PRO data with providers, but to manage expectations and balance the risks and benefits of research, this requires a justifiable data sharing model. We argue that a successful PRO data sharing model will allow children and families to have access to and control over their own PRO data and be engaged in decision-making around how PROs collected for research may be integrated into care, but require support from providers. Conclusion: We propose a PRO data sharing model that can be used across diverse research settings and contributes to improved transparency, communication, and patient-centered care and research.
- Subjects
INFORMATION sharing; PATIENT reported outcome measures; CHILDREN'S health; MEDICAL personnel; PUBLIC health research
- Publication
Quality of Life Research, 2023, Vol 32, Issue 8, p2319
- ISSN
0962-9343
- Publication type
Article
- DOI
10.1007/s11136-023-03393-2