A Commitment to First Nations Data Governance: A Primer for Health Librarians

Abstract

Canada, along with the rest of the world, is currently in the throes of an information and communications revolution that is having a transformative effect on our society. Deep conceptual changes have been enabled, accelerated, and influenced by dynamic new technologies. This revolution reflects both the technologies themselves and the massive amounts of data that tools now capture and process, whether the data relates to consumer behaviour or health care. Data are rapidly becoming a torrent of new information flowing into every area of the global economy, society, and culture [1]. Data are becoming increasingly important in health research, and First Nations health research specifically [2], as the ease of data sharing provides an opportunity for new levels of respect, transparency, and accountability that are transforming how Canadian First Nations health research is governed. The widespread use of data also yields new opportunities for First Nations communities who are exercising ownership of, and support principled access to, the data collected from health research in which they participate. Late in 2013, Canada’s research funding agencies, the Social Sciences and Humanities Research Council, the Natural Sciences and Engineering Research Council, the Canadian Institutes of Health Research, and the Canada Foundation for Innovation*collectively the TC3 , in collaboration with Genome Canada*joined forces to address the challenges of data management and sharing. In the consultation document Capitalizing on Big Data: Toward a Policy Framework for Advancing Digital Scholarship in Canada [3], these Canadian funders try to find workable solutions for the challenges that data present. TC3 plans to work with other organizations and working groups to ensure ongoing consultation and coordination with all stakeholders, including the provinces, in the development of Canada’s national digital infrastructure for research. Early in 2012, two groups emerged out of stakeholder concerns regarding the sustainability and future development of Canada’s advanced digital infrastructure ecosystem. The first was the Research Data Strategy Working Group, which morphed into Research Data Canada later that year [4]. It provides a forum for stakeholders to work together to enhance research data stewardship the management, maintenance, and control of research data. The second was the Leadership Council for Digital Infrastructure [5], which focuses on the development of a national strategy to renew and strengthen Canada’s advanced digital infrastructure ecosystem. Data management, sustainable funding, and integrated planning and sharing were identified as key issues to be addressed. These developments are worth exploring in the context of Ownership, Control, Access, and Possession (OCAP), a set of principles that define how First Nations data can and should be used by researchers, governments, corporations, and other interested parties [6].