| Theme/Bucket | Resource | Description | Purpose | Hyperlink |
|---|---|---|---|---|
| Indigenous data governance | CARE Data Principles | An alternative to OCAP | Governance framework for Indigenous data governance | https://www.gida-global.org/care |
| Indigenous data governance | Indigenous Data Governance (UofC) | UofC has a list of data governance frameworks and their potential use | Many Indigenous communities have developed data governance frameworks to guide research data management. These frameworks respond to and stand against unethical, extractive, deficit-based and harmful research practices. “Ethical research is based fundamentally on the respect for the individuals who participate in the research project. Contrary to this, research that is conducted with First Nations has a history, an ongoing legacy of poor practice. There are fundamental flaws in research conducted to date with First Nations. Solutions to these flaws include a well designed, ethically conducted research which include protocols and codes of ethics. First Nations need to play an active role in the design of the research project. In order to achieve fundamental key principles to ethical research, IE obtaining prior informed consent, protection of privacy, confidentiality, and intellectual property.” (Ethics in First Nations Research, Assembly of First Nations, 2009) These guidelines do not dictate specific research designs. Instead, researchers must create their own research protocols that adhere to and engage with these principles and frameworks. | https://research.ucalgary.ca/engage-research/indigenous-research-support-team/irst-resources/indigenous-data-sovereignty |
| Tutorials Webinars for Data Scientists | Intersectionality in mental health care | Notebook tutorial developed by Yifan Wang, Marta Maslej and Laura Sikstrom to support intersectional fairness assessments | Partnered with Fairlearn/python to generate the open access notebook | https://fairlearn.org/main/auto_examples/plot_intersectional_bias.html |
| Patient Engagement Resources | Patient Centered Outcomes Research Institute | Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options. This research answers patient-centered questions, such as:
| https://www.pcori.org/research/about-our-research/research-we-support/establishing-definition-patient-centered-outcomes-research/patient-centered-outcomes-research | |
| Ethnicity, Race and Racism | Podcast | |||
| Immigration and Health Data | ICES Research Forum | A presentation on the integration of health and immigration data in Ontario through iRCC-ICES partnership. | Showcases that linking health and immigration data enables a more in-depth understanding of health outcomes among immigrants, refugees, and other newcomers, identifying disparities and targeting interventions more effectively. | |
| Community Health and Empowerment | ICES Research Forum | A presentation outlining four principles for integrating community perspectives into health systems, enhancing community health through engagement and governance. | To empower community stakeholders by integrating their contributions into broader health system frameworks to improve health care and outcomes by recognizing and utilizing community-driven knowledge and resources. | |
| International refugee law and justice | Kaldor Centre for International Refugee Law | Guidelines and best practices for effective co-produced research. | To advocate for research involving refugees and displaced people to be inclusive, ethical, and jointly owned by various stakeholders. |
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