CHIEF Whitepaper – Unlocking the Value of Data: Creating a Unified, Informed, Proactive Community

There is a growing need for improved patient experiences and seamless interactions between providers and patients, all at a reduced cost. Patients, providers, researchers, vendors and decision-makers would collectively benefit greatly from data sharing across health care systems. Innovative tools have enabled organizations to collect and use patient-provider data to promote more informed, rapid decision making. However, these same innovative tools can make data sharing across organizations challenging, especially when the data are not standardized to ensure compatibility across organizations. These perceived barriers associated with technology, privacy and processes are deterrents that have hindered the interest in data sharing. Moreover, there has been increasing risk and concern on ethical data usage across industries. Cases of data breaches, data-driven manipulation, and other data-driven threats have increasingly shaken the trust and confidence on how organizations securely access and share data. This inhibits the facilitation of data sharing for the purposes of quality improvement, system governance and population health management.

Despite these challenges, many data sharing solutions have been successfully implemented within Canada, on a smaller scale, and outside of Canada, on a larger scale. Some examples discussed include implementations from eHealth Ontario, Australian Digital Health Agency, and the Centres for Medicare and Medicaid Services. Each example provides an opportunity to learn from the successes and challenges. There is a cost to the continued inability to share data within Canada and across borders that needs to be acknowledged. We are not a leader in this field and instead need to focus on acting quickly to become successful followers of those that have models in place.

As part of Digital Health Canada’s Call to Action on Unlocking the Value of Data (See Appendix, page 29), this report is one of three actions enlisted to help individuals and organizations collaborate to tackle this collective, mounting problem. Its purpose is for readers to understand the importance of addressing the problem as a community and what immediate actions can be taken to transform the problem into an opportunity.

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Acknowledgements

This paper is the outcome of the Digital Health Canada CHIEF Executive Forum “Data Access” Working Group. Production of this paper would not have been possible without the participation of the following people, whose help is gratefully acknowledged here.

  • CHIEF Members
  • Andrew Nemirovsky, Senior Director IM/IT and Chief Information Officer, Nova Scotia Health Authority IM/IT
  • Angela Copeland, Former Director, Data & Analytics Strategy, Projects & Governance, Cancer Care Ontario
  • Clare Atkinson, Platform Account Manager, Oracle Database
  • Dave Wattling, President & CEO, Wattling Group Inc.
  • Douglas Kingsford, CMIO & EMD, Interior Health Authority
  • Eric Sutherland, Executive Director, Data Governance Strategy, CIHI
  • Heather Sulkers, Senior Director, EPMO & Clinical Informatics, CAMH
  • Jason Garay, Former VP, Analytics & Informatics, Cancer Care Ontario
  • Katie Porter, Director of Research Administration, Hamilton Health Sciences Corporation
  • Keltie Jamieson, Sr. Director & Chief Information Officer, Nova Scotia Health Authority IM/IT
  • Lynne Zucker, Executive Vice President, ACCESS Digital Health, Canada Health Infoway
  • Mary Sanagan, Partner, Deloitte
  • Rachel Solomon, Executive Director, Performance Improvement, CAMH
  • Sarah Hutchison, Chief Executive Officer, OntarioMD
  • Shannon Malovec, Principal, Patient Engagement, Telus Health
  • Shiran Isaacksz, Senior Director, Connected Care, UHN
  • Vincci Tang, Deputy CFO & Director of IT and Decision Support, Ontario Shores Centre for Mental Health Sciences

Emerging Professionals

  • Charlotte Carment Baker, Business Analyst, SE Health Care
  • Fiona Fu, Program Specialist, CIHI
  • Lauren Xie, Consultant, Gevity
  • Zaki Hakim, Analytics & AI Strategy Consultant, Accenture