Ethical Issues in Patient Partnership in Psychology and Health Research
Bibliographic record
Abstract
Patient partnership (also called patient and public involvement, citizen or community engagement, community-based participatory research, etc.) is the meaningful and active engagement of diverse individuals with personal experience of a health issue and informal caregivers, including family and friends, on research teams. Patient partnership has rapidly become the norm for psychological and health research in Canada. While patient partnership can significantly benefit patient partners, researchers, and the research itself, it remains a relatively new practice and can be harmful when undertaken poorly. Notably, the Canadian Code of Ethics for Psychologists, Fourth Edition (the ‘Code’) was developed largely before widespread patient partnership practice and neglects to name or define “patient partners” as a group. While we purport that patient partnership is an ethical imperative for psychologists, the role of patient partners must be distinguished from others with whom psychologists and researchers interact (e.g., research participants, clients, employees, trainees, volunteers, clinical advisors). Our main purpose is to discuss key ethical standards from the Code pertinent to patient partnership including informed consent, privacy and confidentiality, fair treatment, general caring, competence and self-knowledge, risk, harms, and benefits, objectivity, straightforwardness, and openness, conflict of interest, and extended responsibility. We also provide guidance regarding challenges to ethical practice in patient partnership, specifically risks posed by “patient partners” as an unnamed group in the Code, issues of power and vulnerability, challenges of multiple roles of patient partners, considerations of equity, diversity, inclusion and the need for an intersectional trauma-informed approach, and guidance for building an evidence base.
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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 | 0.392 | 0.355 |
| Meta-epidemiology (narrow) | 0.001 | 0.002 |
| Meta-epidemiology (broad) | 0.003 | 0.002 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.024 | 0.104 |
| Scholarly communication | 0.025 | 0.018 |
| Open science | 0.007 | 0.020 |
| Research integrity | 0.034 | 0.045 |
| Insufficient payload (model declined to judge) | 0.003 | 0.002 |
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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".