The Social Organization of Patient Engagement: An Institutional Ethnography (IE) Study
Bibliographic record
Abstract
Patient engagement (PE) in research is intended to be a “meaningful collaboration” with patients as partners in all aspects of research (CIHR, 2019). The purpose of PE is to engage people with lived experience of a health condition to integrate into research projects what they deem valuable. Through PE, the hope is that subjugated perspectives are being brought forward. However, no universally accepted framework for including voice, perspective, knowledge, and experience in PE exists (Domecq et al., 2014). Indeed, there is significant variation in how PE is defined and practiced, alongside an inadequate representation of systemically and structurally marginalized populations such as migrant populations, those living in poverty, people with mental illnesses, people who use drugs, and racialized groups (Brown Speights et al., 2017; Tremblay et al., 2020). The experiences of many people living with chronic pain in Canada are exemplary of the kinds of marginalization, exclusion, and depoliticization that necessitate effective ParE. Affecting one in four Canadians over the age of 15 (Campbell et al., 2020, p. 5), chronic pain is a stigmatized health condition within medicine due to its subjective nature. We conducted an institutional ethnography (IE) of ParE that began from the standpoint of people with lived experience of chronic pain and marginalization in order to begin identifying the institutional interests underpinning pain research in Canada. In keeping with our commitment to social justice, our core research team was comprised of three senior investigators experienced in IE, two trainees, and two people with lived experience of chronic pain and marginalization. Drawing on our findings, we discuss how a meaningful shift in conceptualization and practice yields a potential to reframe how certain conditions/diseases are normatively understood, thereby leading to the democratization of research and health for the benefit of people living with chronic pain and marginalization. We highlight how equity, diversity, and inclusion can be applied to ParE; the need to revise existing methodologies; and expanding notions of “who counts” in pain 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 | 0.018 | 0.024 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.002 |
| Science and technology studies | 0.018 | 0.022 |
| Scholarly communication | 0.008 | 0.006 |
| Open science | 0.003 | 0.012 |
| Research integrity | 0.002 | 0.005 |
| Insufficient payload (model declined to judge) | 0.004 | 0.001 |
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".