A/Prof. Anne Preisz1,2, Ms. Sophie Brown1, Ms Deshina Naidoo1
1Sydney Children's Hospitals Network, Sydney, Australia, 2University of Sydney – Sydney Health Ethics, Sydney, Australia
Biography:
Bio to come
Abstract:
Paediatric care is vulnerable to subjectivity; historically children have been “therapeutic orphans” with many medicines available only off-licence or off-label. Subsequently, individual patient usage (IPU) applications for high-cost or novel medicines or therapies (HCNMT) are increasing. This exerts unavoidable tension on the refractory issue of healthcare resourcing, and the ethical imperative to fairly distribute such limited resources while promoting patient values.
Previously, IPU decisions were based primarily on proven safety and clinical efficacy. Now the complexity, uncertainty and often narrow probability of patient benefit from HCNMT, sometimes within a clinical trial or N=1, makes fair decision-making more challenging.
A Sydney Children’s Hospitals Network (SCHN) project planned, developed, piloted, and evaluated a defensible ethics framework to assess HCNMT IPUs. We aimed to promote transparency, fairness, and tackle conflicts of interest and organisational risk due to ad-hoc IPU processes. A multi-level scaffold first, aims to support clinician’s IPU and renewal reports submission, and second, utilises a decision-making support tool for the Medicines and Therapeutics Committee (MTC). This ensures relevant clinical information is provided, while streamlining bureaucratic processes.
The pilot realised benefits to patients, clinicians and SCHN. The tool is sustainable and potentially transferrable to adult health systems. Identified barriers involved collaborative innovation with end-users. Our implementation pilot embedded these tools across SCHN to facilitate culture change and stewardship of HCNMT.
In this session, facilitated by Anne Preisz, we will present our project, tools, and learnings, with an expert panel, including Dr Linda Sheahan, Clinical Ethics Lead at SESLHD and Palliative Care Consultant, and A/Prof Phil Britton, Infectious Diseases Paediatrician and MTC chair. We will elicit diverse views and explore the ethics of HCNMT provision in a time-poor environment with the audience and panel. Acknowledging this recurrent problem whilst reviewing feasible solutions for HCMNT provision.