Program Lead, Informatics Governance, Program Lead, Informatics Governance, Toronto, Ontario

Ontario Brain Institute (OBI) is looking for a passionate, enthusiastic Informatics Governance Lead, to champion OBI’s Brain-CODE data governance, privacy and security initiatives. You will work in close partnership with the Integrated Discovery Programs (IDPs), OBI’s research programs, to transfer their data to Brain-CODE. The IDPs bring together researchers, clinicians, industry, and patient advocacy groups to address brain disorders that represent a significant burden to Ontarians. 

In this role, you will:

  • Work collaboratively across the organization and with the IDPs to understand, prioritize, and provide advice on informatics governance, privacy and security needs.
  • Oversee the governance aspect of data linkages between Brain-CODE and external data repositories; Act as an adviser to external groups wishing to share data.
  • Manage, review and develop participation agreements, data use agreements, service agreements, and other agreements as they relate to privacy, security and data sharing.
  • Coordinate with the IDPs to ensure integration with the Brain-CODE informatics platform. This may include preparing summary documents; communicating with researchers; maintaining strong relationships with Research Ethics Boards, Privacy Officers and institutions across the Integrated Discovery Programs; developing and reviewing milestone reports and governance documents, and planning workshops and other project management tasks.
  • Manage and support service providers to ensure suitable technology and standard operating procedures related to data privacy are established on Brain-CODE to ensure ongoing compliance.
  • Together with the Information Security Committee, manage the privacy practices for Brain-CODE, proactively monitor, identify and manage potential threats; Identify the need for novel approaches to anonymize data, as needed.
  • Lead the development of governance policies related to the acquisition, transfer, privacy, security, and sharing of data working closely with privacy experts, including the Information and Privacy Commissioner of Ontario. Conduct Privacy Impact Assessments, risk assessments and develop risk remediation plans on an ongoing basis.
  • Develop, review and track patient consent forms and data transfer agreements that will allow researchers to transfer data into Brain-CODE.
  • Promote and administer the development and deployment of standardization methods between the IDPs, relevant autonomous databases, and Brain-CODE. This will include standardization of clinical variables, neuroimaging, and potentially other types of data across brain disorders.
  • Assist in the development and administer initiatives designed to optimize the progress of Brain-CODE, including data acquisition and transfer of IDP data to Brain-CODE.
  • Provide assistance with other endeavours related to Brain-CODE and more generally those of the Ontario Brain Institute.

Your experience & qualifications include:

  • Previous experience in a privacy role, with demonstrated knowledge and understanding of PHIPA and TCPS2.
  • Extensive experience in, or demonstrated understanding of clinical research, particularly in the neuroscience field.
  • Sound understanding of governance policies and methodologies for big data initiatives dealing with patient and research data, as well as sound understanding of the privacy and security implications for big data projects that hold patient data.
  • Understanding of the privacy and security implications for big data projects that hold patient data;
  • A diplomatic approach to resolving difficult issues
  • Have demonstrated work experience with multi-centred data acquisition projects, research protocols and research ethics
  • Demonstrate knowledge and understanding of relational database management systems;
  • Solid understanding of standardization practices (developing common data elements) for multidimensional databases (multiple data-types and multiple disorders).
  • An advanced degree, preferably in a computational or neuroscience-related area and have had training and experience in research project management, informatics governance policy development, common data elements best practices, data privacy protocols.
  • Well-honed research, analytic, and data management skills to enable you to clearly identify goals, translate plans into deliverables, track progress, and manage data.
  • Versatile and flexible in your ability to manage multiple projects and to anticipate and modify your work plans to meet evolving priorities.
  • Strong written and oral communication skills.
  • Certified Information Privacy Professional (CIPP/C) certification an asset.
  • Privacy by Design Ambassador designation an asset. 

Application Submission Information:

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