Self‐determination and Reciprocity: Ethical Research Engagement with Indigenous People Living with Dementia in Canada
Bibliographic record
Abstract
It is vital to incorporate thoughtful, rigorous and intentional approaches to the engagement of Indigenous people living with dementia and their families in research and policy. Engaging people living with dementia can be different when working in partnership with Indigenous communities. Authentic engagement requires engagement at multiple levels to preserve self-determination across the entire research process. The Indigenous research landscape in Canada is framed by both federal research requirements and community-driven Indigenous ethical principles. The federal research requirements, articulated in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, outline when and how community engagement should be undertaken with First Nations, Métis and Inuit individuals and communities. This includes when research will be done in partnership with Indigenous communities, or when research will be done with or analyses conducted with broader populations that may include and impact Indigenous people. These requirements provide a fail safe for academic Institutional Research Ethics Boards with which to hold researchers accountable to in a western model of research. It is perhaps more important, however, to consider community-led Indigenous ethical principles when engaging Indigenous people living with dementia and their families in research. Concepts such as respect, reciprocity, relevance and responsibility guide all our work but there are also distinctions-based approaches to ethical research relationships. Research with First Nations communities needs to consider the OCAP (Ownership, Control, Access, and Possession) research principles; research with Métis communities can refer to the Métis principles of research, and research with Inuit communities should implement Inuit research principles. In this session, we present examples of our commitment to upholding and asserting Indigenous self-determination while engaging Indigenous people with lived experience of dementia in research with the communities we each work with. Genuine relationships are the foundation and these relationships must be embedded and include people living with dementia in all stages of research, from initial research design, data collection, analysis and knowledge mobilization. We do this through sharing in ceremony, including traditional Knowledge Keepers and protocols and ensuring research and knowledge is co-produced and owned by the communities leading the research.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.044 | 0.058 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.056 | 0.023 |
| Scholarly communication | 0.017 | 0.005 |
| Open science | 0.004 | 0.015 |
| Research integrity | 0.004 | 0.010 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".