Patients’ engagement in primary care research: a case study in a Canadian context
Bibliographic record
Abstract
Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the outcomes on engagement and actually how it affects research. In Canada, the Canadian Institutes of Health Research has a Strategy for Patient-Oriented Research (SPOR), which in 2016 funded Ontario's INSPIRE-PHC centre of excellence and its Patient Engagement Resource Centre (PERC). PERC conducted an online survey of the three INSPIRE-PHC studies that engaged patients to guide their research. We found that patient partners (PPs) were positive about their experience during research meetings, the value of collaboration, and the support that was provided. They were more involved in early stages of their research projects than in ongoing research activities. PPs valued their experience and also felt they had improved the research process and outcomes. This case study showed how PPs perceive their roles, but a more diverse group of PPs might have more differences in their experience. Background Patient engagement in primary care research is increasing and is now an expectation in many countries and funding agencies. In Canada, the Canadian Institutes of Health Research (CIHR) has mandated that patients be included as partners to guide the research process. Ontario's Patient Engagement Resource Centre (PERC) was established in 2016 by the INNOVATIONS STRENGTHENING PRIMARY HEALTH CARE THROUGH RESEARCH (INSPIRE-PHC), one of 12 centres of excellence in the province funded under the CIHR's Strategy for Patient-Oriented Research (SPOR) initiative. PERC's mission is to support the authentic engagement of patients in primary care research. The present case study examines patients' experience of engagement in INSPIRE-PHC research studies. Methods PERC conducted a web-based evaluation survey across the three INSPIRE-PHC studies that engaged patient partners (PPs). We used data collection tools developed by McMaster University (the Public and Patient Engagement Evaluation Tool (PPEET)) and the Patient-Centred Outcomes Research Institute (Ways of Engaging- ENgagement ACtivity Tool (WE-ENACT)) to assess patient experience and areas of involvement. These included both closed- and open-ended questions. Results The quantitative data showed that PPs were positive about their experience during research meetings, the value of collaboration, and the support that was provided to facilitate engagement. Most of them were highly involved in the initial stages of their research projects but much less involved in operational activities. The qualitative findings showed that, overall, PPs valued their experience, felt prepared to contribute and that their contributions were welcomed. In particular, they considered that they had improved the research process and outcomes. The majority also reported that they had learned from the experience and found it valuable. Conclusions This case study shows that patients engaged in three primary care research studies found the experience to be positive and felt that they had contributed to the research. This study adds to the literature on the evaluation of patient engagement in primary health care research. However, a study of a more diverse sample of PPs might elucidate differences in experience that could enrich future patient engagement activities.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.023 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.003 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.004 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".