Are you a caregiver or family member who is currently, or has recently (within 5 years), supported their newborn admitted to the Neonatal Intensive Care Unit (NICU)? Most drugs that are used in NICUs have not been approved by Health Canada for newborns, mainly due to lack of studies in this population. Dosing is determined using weight-based doses determined by studies in adult populations and can result in large differences in drug levels and outcomes in newborn infants.
Precision dosing using mathematical models, called “popPK models”, can use multiple factors (sex, gestational age, genetic factors, etc) to create a personalized dose for drugs commonly used in the NICU. Researchers are looking for a parent or caregiver to be involved in research around creating a clinician-facing platform that uses the models for more precise dosing in critically ill newborn patients. The goal is for this platform to be used by NICUs across Canada and globally to improve the care of critically ill newborns by increasing drug efficacy and reducing adverse drug reactions.
They will be submitting this proposed project for a grant application, and seeking a patient advocate to serve as a Co-Investigator. In this role, the patient advocate will meet with me to provide insight on the overall project and review the application materials for feedback. There are several areas of the proposed project application that would greatly benefit from a patient advocate’s perspective:
1) As part of the proposed project, interviews will be performed by the study team with several interest-holders, including caregivers of critically ill newborns (through a method called, “qualitative study”). These interviews will seek to understand the facilitators, barriers, and preferences of using model-informed precision dosing tools to dose critically ill newborns. The patient partner will have the opportunity to provide input on the overall design and aims of this study.
2) The proposed project will also include a study on understanding patient important outcomes. Similarly, the patient partner will have the opportunity to provide input on the overall design and aims of this study.
3) The patient partner will provide advice on effectively disseminating the results of this proposed project to ensure the knowledge gained and implications of the work are understood by caregivers of critically ill newborns (this process is called “knowledge translation”).
Ultimately, a patient partner serving as a Co-Investigator on this grant application will help provide a perspective to account for lived experiences to increase the likelihood for knowledge translation of results to caregivers of critically ill newborns and successful future platform implementation.
Eligibility
- A caregiver or family member who is currently, or has recently, supported their newborn admitted to the Neonatal Intensive Care Unit
- Lives in Atlantic Canada
Time commitment
Engagement will begin immediately and end early April. We will have approximately two meetings that are one hour each. The review of application materials is estimated to be a time commitment of 2-3 hours.
Compensation
There is no compensation provided to the successful patient advocate for their role as Co-Investigator on the grant. However, should the project get funded, there may be opportunities for compensation with continued involvement.