Health Research Data: Strategies and policies
CIHR and CIHR-funded Initiatives have engaged in the development of strategies and policies that guide data-related directions and expectations. Please consult the strategies and policies below for more detailed information.
Health Research Roadmap II: Capturing Innovation to Produce Better Health and Health Care for Canadians
CIHR's Strategic Plan sets a direction for enabling the research community to address increasingly complex health research challenges by harnessing the power of data. This includes managing the creation of new data that are generated by the research we fund, as well as research that uses big data, both with the goal of spurring innovation.
Open Government/Open Science
As outlined in Canada's Action Plan on Open Government 2014-2016, the Government of Canada has prioritized working with the national and international open government community to create greater transparency and accountability, increase citizen engagement, and drive innovation and economic opportunities through open data, open information, and open dialogue. As part of a commitment to increase the openness of Federal science activities (Open Science), the Tri-Agencies are engaging with other science-based departments and agencies to develop and implement activities related to open access to research outputs and digital data management.
Policies and statements guiding CIHR-funded research
Global Alliance for Genomics and Health: Framework for Responsible Sharing of Genomic and Health-Related Information
In 2014, the Global Alliance for Genomics and Health introduced their Framework for Responsible Sharing of Genomic and Health-Related Information. As a member of the Alliance, CIHR endorses the foundational principles and core elements for responsible data sharing as outlined within this framework. .
Sharing research data to improve public health: full joint statement by funders of health research
In 2011, CIHR became a signatory on a statement led by the Wellcome Trust that openly communicates a joint commitment to increase the availability of research data to the scientific community and to promote the efficient use of this data to further advancements in public health. The statement specifies that this increased access will be facilitated in an equitable, ethical, and efficient manner.
Statement on Data Sharing in Public Health Emergencies
Building on the above, in 2016, CIHR joined over 30 global health bodies in signing an international Statement on Data Sharing in Public Health Emergencies. This statement calls for all research data collected during the ZIKA virus outbreak and future public health emergencies to be made publicly available as quickly and openly as possible. It was created in an effort to ensure that all global public health emergencies are informed by the highest quality research evidence and data.
Tri-Agency Open Access Policy on Publications
In 2015, the Tri-Agencies released a harmonized open access policy on publications that helps to achieve greater access to research publications and data. Individuals funded by CIHR are required to deposit bioinformatics, atomic and molecular coordinate data into the appropriate public database immediately upon publication of research results. They are also required to retain original data sets for a minimum of five years or longer if other policies apply.
Tri-Agency Statement of Principles on Digital Data Management
In 2016, the Tri-Agencies adopted a Statement of Principles on Digital Data Management as an important step towards strengthening research data management in Canada. The Statement outlines the agencies' overarching expectations for research data management and the roles of researchers, research institutions, research communities, and research funders in supporting data management.
Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2)
Chapter 9 of the TCPS2 provides guidelines for research involving First Nations, Inuit, and Metis People of Canada. The chapter calls for the respect of community customs and codes of practice such as asserting the ownership of, control of, access to, and possession (OCAP) of research processes affecting communities and the resulting data. OCAP also addresses the issues of privacy, intellectual property, data custody, and secondary use of data.
Policies developed by specific CIHR-funded Initiatives
The following is a sampling of policies established by CIHR-funded Initiatives to guide their research and data-sharing processes:
- Canadian Consortium on Neurodegeneration in Aging - Publications and Data Access Policy
- Canadian Longitudinal Study on Aging - Data Sample and Access Policy and Guiding Principles
- International Human Epigenome Consortium - Data policies and guidelines
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