Open Data is more complicated in Healthcare than in other research fields, however both UHN and some funders are committed to Open Science, which can include Open Data.
Similar to Open Access, "Open Data" is about making research data freely available for others to analyze and possibly re-use. It is an accountability tool for the original researchers, in that other researchers can check their work. It also saves other researchers from re-collecting the same data for other studies.
If you are seeking funding, some research funders are starting to require that researchers make the results of their research, including the data, openly available to be examined and analyzed. In those cases, part of the grant application may include a plan detailing how the data will be managed, including the type of data, the format it will be in, and the place it will be published.
In order for your data to be accessed, examined and analyzed by others, where you have published it, how you have organized it and the file formats you have made it available in matters. A pdf does not allow other researchers to dig into the numbers. Posting your files on your team's website only allows people who already know to look for them to find them. Fortunately there are tools, examples and tips that can help you be as transparent as possible with your research.
Chauvette A, Schick-Makaroff K, Molzahn AE. Open Data in Qualitative Research. International Journal of Qualitative Methods. 2019;18:160940691882386.
Forero, D.A., Curioso, W.H. & Patrinos, G.P. The importance of adherence to international standards for depositing open data in public repositories. BMC Res Notes 14, 405 (2021).
Mayernik MS. Open data: Accountability and transparency. Big Data & Society. 2017;4(2):205395171771885.
Molloy JC. The Open Knowledge Foundation: open data means better science. PLoS biology. 2011;9(12):e1001195.
Indigenous Data Sovereignty includes the individual and collective rights of Indigenous Peoples to control the collection, storage, ownership, use, and access of data from or about their communities.
Carroll, S.R., Herczog, E., Hudson, M. et al. Operationalizing the CARE and FAIR Principles for Indigenous data futures. Sci Data 8, 108 (2021).
Rainie, S., Kukutai, T., Walter, M., Figueroa-Rodriguez, O., Walker, J., & Axelsson, P. (2019) Issues in Open Data - Indigenous Data Sovereignty. In T. Davies, S. Walker, M. Rubinstein, & F. Perini (Eds.),
Walter M, Kukutai T, Carroll SR, Rodriguez-Lonebear D. Indigenous Data Sovereignty and Policy. 1st ed. Carroll SR, Kukutai T, Walter M, editors. United Kingdom: Routledge; 2021.
