Co-creating and hosting PxP: A conference about patient engagement in research for and by patient partners
Bibliographic record
Abstract
Research projects, initiatives and conferences that include patients as partners rather than as participants are becoming more common. Including patients as research partners is an approach called patient engagement or involvement in research, and we will call it patient engagement throughout this paper. Patient engagement moves traditional health research conferences and events to include a broader audience for their knowledge exchange and community building efforts, beyond academics and healthcare professionals. However, there are few examples of conferences where patients are given the opportunity to fully lead. Our conference went beyond patient engagement – it was patient-led. Patient partners conceived, planned, and decided on all aspects of a virtual conference. We present the work and processes we undertook throughout 2023 to create and produce a conference called “PxP: For patients, by patients” or PxP for short, with a tagline of “Partnering to make research stronger.” PxP was patient-led, about patient engagement in research, and supported by the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis and was not specific to any disease or condition. The PxP website, also known as the PxP Hub, now houses the recordings from the conference along with a variety of resources about patient engagement in research. These resources were recommended by the PxP Steering Committee members, speakers, and other patient partners who attended the 2023 conference. We lead you through how the idea for PxP was generated; how the international patient partner Steering Committee was convened and supported; how PxP was brought to life over a number of months; the PxP 3-day event and feedback collected about it to improve future efforts; trade-offs, challenges and learnings; resources required to support this type of event; and what the future holds for PxP in 2024 and beyond.It’s time to elevate patients into leadership roles for conferences and events, and we encourage you to adopt the PxP ethos by using or adapting our approach and resources to support this model.
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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 | 0.064 | 0.080 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.011 | 0.008 |
| Scholarly communication | 0.014 | 0.015 |
| Open science | 0.003 | 0.036 |
| Research integrity | 0.007 | 0.022 |
| Insufficient payload (model declined to judge) | 0.030 | 0.013 |
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".