At the end of this presentation, participants should be able to:
- Understand limitations of traditional neonatal outcome measures
- Understand parents have different ideas about what matters
- Discuss incorporating stakeholder important outcomes in clinical trials is essential
- Discuss future clinical trials and societal resource allocation policies should reflect stakeholders’ priorities
About the presenter:
Annie Janvier, BSc, MD, PhD, FRCPC
University of Montreal
Hôpital Sainte-Justine
Dr. Annie Janvier is a neonatologist, a clinical ethicist and an author working at the University of Montreal, Canada and Hôpital Sainte-Justine. She works first hand with patients and families confronted with difficult decisions such as end-of-life issues, and decision-making in the face of uncertainty.
At University of Montreal, she is member of the Bureau de L’Ethique Clinique and co-directs the Masters and PhD programs in Clinical Ethics. At Sainte-Justine hospital, she is an active member of the Clinical Ethics Unit and Palliative Care Unit of Sainte-Justine Hospital and is the director of the Research Unit dedicated to Clinical Ethics and “Partnering with Families”. Her main research interests in bioethics are decision-making for neonates and other incompetent patients with regards to the opinions and attitudes of caregivers and society. She investigates parental perspectives regarding intensive care decisions, death and disability. She has demonstrated many contrasts between provider and parental perspectives and investigates how to optimize communication between clinicians and patients/families. She also examines the positive impacts that follow the integration of “veteran” patients/parents in clinical care, teaching and research. In each of her projects she includes parents as co-investigators. She is author of many narratives, publications and books in clinical ethics and medicine.
