Patient and public involvement and engagement in methodology research: process, experiences, and recommendations from the SPIRIT- and CONSORT-Surrogate project
Bibliographic record
Abstract
BACKGROUND: While there are increasing calls for Public and Patient Involvement and Engagement (PPIE) in methodology research, including the development of reporting guidelines, practices continue to emerge. This paper reports on the process, experiences, reflections, and recommendations of both the PPIE partners and other researchers participating in the development of (Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) and Consolidated Standards of Reporting Trials (CONSORT)-Surrogate reporting guidelines. METHODS: Development of the SPIRIT- and CONSORT-Surrogate guidelines involved four phases: (1) literature reviews; (2) an e-Delphi survey; (3) a consensus meeting, and (4) knowledge translation. PPIE was integrated in Phases 2, 3 and 4. An encompassing budgeted PPIE strategy detailing involvement in all project phases was prepared and implemented by researchers and PPIE partners. Implementation included a learning workshop (attended by 19 PPIE partners) to build PPIE partners’ capacity and confidence to participate in the e-Delphi survey (Phase 2) and the invitation of four PPIE partners to the consensus meeting (Phase 3). Experiences and reflections of PPIE in the project, based on feedback surveys from PPIE partners participating in the project and reflective notes from meetings, were used to formulate recommendations. RESULTS: In total, 19 PPIE partners took part in the e-Delphi survey (Phase 2), four joined the consensus meeting (Phase 3), and consequently co-authored the guidelines and contributed to the development of an educational animation video (Phase 4). Partners felt that facilitators for involvement in Phase 2 included a learning workshop, financial compensation, support during e-Delphi survey participation (such as a glossary and help texts) and for Phase 3, the main facilitator was allowing partners to contribute first during the consensus meeting. The PPIE partners who joined the consensus meeting (Phase 3) presented the patient perspective; reminded researchers of why the project was important; helped with clarification of issues; corrected grammar; suggested strategies to disseminate and implement the extensions; and created humour. Reflecting on the involvement, both the PPIE partners and researchers felt it was valuable to the project. CONCLUSIONS: Based on the experiences, we make six recommendations for integrating PPIE in projects to develop reporting guidelines: involve early; involve with a plan and layered approach; involve meaningfully in a genuine way; involve with support and in safe spaces; involve with reflection and feedback; and involve with a budget to compensate for time and effort.
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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 | 0.752 | 0.672 |
| Meta-epidemiology (narrow) | 0.001 | 0.002 |
| Meta-epidemiology (broad) | 0.002 | 0.003 |
| Bibliometrics | 0.003 | 0.004 |
| Science and technology studies | 0.008 | 0.020 |
| Scholarly communication | 0.019 | 0.019 |
| Open science | 0.006 | 0.038 |
| Research integrity | 0.011 | 0.022 |
| 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".