BC team aims to use data to improve MCNH outcomes

VANCOUVER – The team from the Pediatric Sepsis Data CoLaboratory (Sepsis CoLab), the Centre for International Child Health (CICH) at BC Children’s Hospital, and the University of British Columbia (UBC) has been awarded a Data Champions Pilot Project grant from the Digital Research Alliance of Canada.

Congratulations to Dr. Mark Ansermino (pictured), Dr. Niranjan Kissoon, Dr. Matthew Wiens, Dr. Gina Ogilvie, Dr. Srinivas Murthy, Gurm Dhugga, Maggie Woo Kinshella, and Jessica Trawin!

The project aims to improve maternal, newborn and child health (MCNH) outcomes through capacity building and optimizing the re-use of clinical data through:

• Open Data training,
• Research supported de-identification methods for clinical data,
• Advocating for better data access policies at academic institutions, and
• Drafting an interdisciplinary grant proposal to inform future Open Data initiatives.

The Sepsis CoLab’s prior work training, mentoring students, and academic researchers in open science, data sharing and de-identification of health data at UBC provides a strong foundation for this upcoming project. The Data Champions Pilot Project will help expand the CoLab’s existing repository of training videos that educate on sharing data in Dataverse, a secure virtual archive for research and quality improvement data with a rigorous data governance structure.

Project activities will also provide an opportunity for disseminating a recently developed framework for a statistically-based de-identification process for clinical data with a utility-based validation.

Establishing sustainable research data management infrastructure will facilitate a more streamlined data sharing process and advance the adoption of open data methods among the Canadian MNCH research community. This project is supported in part by funding from the Digital Research Alliance of Canada, which plays a critical role in advancing the Government of Canada’s National Digital Research Infrastructure Strategy.

For its part, the Pediatric Sepsis Data CoLaboratory (Sepsis CoLab) is an international data-sharing network of healthcare workers, policy makers, researchers, and advocacy partners collaborating to address the high burden of pediatric sepsis mortality and morbidity globally.

Worldwide, at least 11 million people die every year due to sepsis (severe infections), the majority in low- and middle-income countries. Most of these deaths are treatable and preventable. To help us prevent these deaths, we need to collect accurate information on patients to help health care workers make individual treatment decisions. In addition, collecting this data can also help hospitals gain insight into facility-wide processes, leading to a better understanding of the safety, quality, and efficiency of their care. Unfortunately, accurate data collection is often challenging in under-resourced areas.

The vision for the Sepsis CoLab arose out of the recognition that despite important milestones recently achieved in the fight against sepsis, lack of routinely collected data and coordination is hampering progress. This international network shares information and data to further common priorities among collaborators to improve sepsis treatments and outcomes. The Sepsis CoLab facilitates partnerships to develop and validate tools for data collection and data sharing, enabling continuous quality improvement of care in health facilities across the world.

The Centre for International Child Health (CICH) at BC Children’s Hospital in Vancouver and the World Federation of Pediatric Intensive and Critical Care Societies (WFPICCS) have entered into a partnership and have launched this global network for collaboration and data-sharing to address pediatric sepsis mortality and morbidity. Targeted, investigator-driven initiatives within the network are being used to improve sepsis treatments and outcomes.