A104 PATIENT AND PUBLIC INVOLVEMENT (PPIN) IN IBD RESEARCH - A SCOPING REVIEW
Bibliographic record
Abstract
Abstract Background Over the past 10 years, interest in patient and public involvement (PPIn) in research has grown. Several arguments support the engagement of patients as partners in the research process. Patients with lived experience of a condition can offer their knowledge to study design as experience-based experts, helping researchers incorporate patient-pertinent outcomes. PPIn has also been shown to boost patient enrolment and retention in clinical trials. Benefits, challenges, and best practices of PPIn have been examined in other fields. However, to date, no study has examined PPIn in inflammatory bowel disease (IBD) research. Many factors amenable to research involvement may impact IBD patients’ quality of life, including disease morbidity, complications, and efficacy/side effects of therapy. Aims This review aims to characterize methods of PPIn in IBD research and highlight themes relating to best practices, benefits, and challenges. Methods We ran a systematic search on MEDLINE, EMBASE, and Cochrane for all IBD research studies in which IBD patients were involved in the research process. PPIn included but was not limited to patient input in one of the following 3 stages: Study Design (prioritization of research topics, outcome selection, study tool development), Study Execution (recruitment, data collection & analysis), and Dissemination of Research. After abstract and full-text screening, 14 studies were selected. Results Patients were recruited for PPIn through IBD and patient organizations (7/14), outpatient clinics (4/14), tertiary care sites (2/14), and pre-existing patient advisory groups (1/14). The majority of studies (11/14) engaged patients in the development of study materials, which included a physical activity intervention for stoma patients, an IBD pregnancy decision aid, and a quality of life questionnaire. Two studies interviewed patients to determine comprehensibility of survey items and guide revisions. One study involved patients in data analysis and manuscript development. Most consultations were open-ended, including focus groups (8/14) and semi-structured interviews (3/14). According to study authors, PPIn helps guide IBD research priorities by focusing on patient-relevant issues. Authors also cited the role of PPIn in designing patient-friendly study tools. One challenge reported by 2 studies was that PPIn requires patients to have access to high-quality information and requires a significant time commitment, which may contribute to demographic biases. Conclusions The majority of IBD studies engaged patients in an open-ended format and were engaged in study design, particularly in developing study materials. Authors recommend continuous involvement of patients throughout the research process to address their research priorities. Funding Agencies None
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.066 | 0.175 |
| Meta-epidemiology (narrow) | 0.002 | 0.002 |
| Meta-epidemiology (broad) | 0.006 | 0.005 |
| Bibliometrics | 0.026 | 0.028 |
| Science and technology studies | 0.003 | 0.004 |
| Scholarly communication | 0.010 | 0.011 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.006 | 0.004 |
| Insufficient payload (model declined to judge) | 0.005 | 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".