What is “the patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories
Bibliographic record
Abstract
Public and patient involvement (PPI) in health care may refer to many different processes, ranging from participating in decision-making about one's own care to participating in health services research, health policy development, or organizational reforms. Across these many forms of public and patient involvement, the conceptual and theoretical underpinnings remain poorly articulated. Instead, most public and patient involvement programs rely on policy initiatives as their conceptual frameworks. This lack of conceptual clarity participates in dilemmas of program design, implementation, and evaluation. This study contributes to the development of theoretical understandings of public and patient involvement. In particular, we focus on the deployment of patient engagement programs within health service organizations. To develop a deeper understanding of the conceptual underpinnings of these programs, we examined the concept of "the patient perspective" as used by patient engagement practitioners and participants. Specifically, we focused on the way this phrase was used in the singular: "the" patient perspective or "the" patient voice. From qualitative analysis of interviews with 20 patient advisers and 6 staff members within a large urban health network in Canada, we argue that "the patient perspective" is referred to as a particular kind of situated knowledge, specifically an embodied knowledge of vulnerability. We draw parallels between this logic of patient perspective and the logic of early feminist theory, including the concepts of standpoint theory and strong objectivity. We suggest that champions of patient engagement may learn much from the way feminist theorists have constructed their arguments and addressed critique.
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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 | 0.060 | 0.037 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.015 | 0.192 |
| Scholarly communication | 0.019 | 0.030 |
| Open science | 0.004 | 0.018 |
| Research integrity | 0.010 | 0.016 |
| 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".