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An open data initiative for optimizing the re-use of clinical data to improve maternal, neonatal and child health outcomes

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

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.