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Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based
Shelley Vanderhout1, Beth K Potter1, Maureen Smith2
1School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada.
Insights
Sharing patient-reported outcomes (PROs) data in child health research is ethically preferable. A robust data sharing model ensures children and families control their PRO data, enhancing transparency and patient-centered care.
Area of Science:
- Pediatric Health Research
- Bioethics
- Data Management
Background:
- Collecting patient-reported outcomes (PROs) in pediatric research presents ethical and logistical challenges.
- Sharing PRO data requires careful consideration of risks, benefits, and stakeholder engagement.
Purpose of the Study:
- To analyze the ethical considerations of sharing PRO data in child health research.
- To identify characteristics of an optimal model for collecting, monitoring, and sharing PRO data.
Main Methods:
- Literature review and analysis by a multidisciplinary team.
- Construction and evaluation of three distinct models for pediatric PRO data management in research.
- Incorporation of ethical principles, logistical factors, and patient/family engagement strategies.
Main Results:
- Sharing pediatric PRO data with healthcare providers is ethically preferable.
- A justifiable data sharing model is essential for managing expectations and balancing risks/benefits.
- Successful models empower children and families with access and control over their PRO data, involving them in integration into care.
Conclusions:
- A proposed PRO data sharing model enhances transparency, communication, and patient-centered research.
- This model is adaptable across various research settings.
- It fosters improved collaboration between researchers, providers, children, and families.
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.
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