Abstract
Administrative health data is recognized for its value for conducting population-based research that has contributed to numerous improvements in health. In Canada, each province and territory is responsible for administering its own publicly funded health care program, which has resulted in multiple sets of administrative health data. Challenges to using these data within each of these jurisdictions have been identified, which are further amplified when the research involves more than one jurisdiction. The benefits to conducting multi-jurisdictional studies has been recognized by the Canadian Institutes of Health Research (CIHR), which issued a call in 2017 for proposals that address the challenges. The grant led to the creation of Health Data Research Network Canada (HDRN), with a vision is to establish a distributed network that facilitates and accelerates multi-jurisdictional research in Canada. HDRN received funding for seven years that will be used to support the objectives and activities of an initiative called the Strategy for Patient-Oriented Research Canadian Data Platform (SPOR-CDP). In this paper, we describe the challenges that researchers face while using, or considering using, administrative health data to conduct multi-jurisdictional research and the various ways that the SPOR-CDP will attempt to address them. Our objective is to assist other groups facing similar challenges associated with undertaking multi-jurisdictional research.
Highlights
The aims of health research are to advance knowledge and influence decision making in order to improve the health of individuals and populations
The purpose of this paper is to describe the challenges multi-jurisdictional research that are faced by countries around the word, and how the Strategy for Patient-Oriented Research (SPOR)-CDP initiative will address them in Canada with a specific focus on the activities during its first year of existence
Recent funding to support the development of the SPOR-CDP will facilitate processes for conducting administrative health data research across Canada and eventually international research
Summary
The aims of health research are to advance knowledge and influence decision making in order to improve the health of individuals and populations. Administrative data are usually de-identified when used for research purposes meaning that any identifying or potentially identifying information about an individual has been removed in a way that minimizes the likelihood that an individual’s identity can be determined by any reasonably foreseeable method While these studies are considered low risk to individuals whom the data represents by ethics boards, researchers must meet a set of regulatory and governance requirements to ensure appropriate use of data, including protection of the confidentiality and privacy of the information and demonstration of the potential for public value. Preparing comparable datasets in each jurisdiction may not be possible, or running them in a distributed mode may have analytical implications, such as diminished power All of these barriers and challenges impact the pace of the research and the amount of resources that are required as a considerable amount of time is spent preparing the data, especially if study personnel do not have adequate experience and familiarity with the data sets [24]. Establish strong partnerships with patients and the public and with Indigenous communities
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