Protocol for a two-arm parallel randomized controlled trial to evaluate patient and researcher co-presentation of research results: the Scleroderma Patient-centered Intervention Network—Patients Alongside Investigators in Research-Sharing (SPIN-PAIRS) trial
Notice bibliographique
Résumé
BACKGROUND: Researchers are mandated ethically to share study results with participants, and funding agencies emphasize dissemination to others with relevant lived experience. Many researchers, however, find it difficult to communicate study purposes, methods, results, and significance to patients. Our Scleroderma Patient-centered Intervention Network (SPIN) piloted "co-presentation," which involves researchers and patient partners jointly presenting results to other patients. The SPIN Patients Alongside Investigators in Research-Sharing (SPIN-PAIRS) Trial will be conducted as part of a 90-min virtual research event for people with systemic sclerosis (SSc, scleroderma) and will compare patient and researcher partner co-presentation versus researcher-alone presentation. Primary outcomes will be event attendee ratings of presentations on (1) information completeness, (2) understandability, (3) relevance to patients, and (4) trust in findings. Secondary objectives are to (1) conduct subgroup analyses of primary outcomes by participant characteristics (gender, age, race or ethnicity, country, education level, health literacy) and (2) use qualitative interviews to better understand outcome ratings and inform co-presentation. METHODS: This will be a mixed-method study with (1) a two-arm parallel superiority randomized controlled trial embedded in a patient-oriented research event and (2) interviews with patient and researcher co-presenters, separately, and with trial participants. Pre-event, researchers will be selected to present via an open call for abstracts and a patient-led selection committee. To avoid presentation-related biases, pre-event, researchers will record researcher-alone presentations. They will then receive co-presentation training and develop co-presentations with patient partners, which will also be recorded. Eligible trial participants will be adults aged 18 or older who indicate they have been diagnosed with SSc by a physician. We will recruit participants via social media and email lists from our multinational SPIN Cohort and from patient organization partners to attend the event and rate presentations. Participants will be recruited to register for the event beginning in August 2025. Registered participants will be invited to confirm their registration and enroll in the trial on the day of the event. We will require at least 116 participants for ≥ 80% power but will not restrict the number of enrollees. We will randomly assign event attendees 1:1 to virtual rooms with (1) four pre-recorded patient-researcher co-presentations or (2) four pre-recorded researcher-alone presentations. The same studies will be presented in each arm with live questions and answers after each presentation in each virtual room. Attendees will rate each presentation immediately following the presentation. Participants will not be informed that they are part of a randomized trial, or that two conditions are being compared and will be blind to study comparisons and hypotheses. Presenters will not be blinded during the event. We will compare outcomes, all measured via 0-10 numerical rating scales, using linear mixed models with four observations per participant for each outcome (one observation for each presentation). Interviews will be conducted < 2 weeks post-event, and verbatim transcripts will be analyzed using an inductive-deductive thematic approach. DISCUSSION: Findings will contribute to the evidence base on effective strategies for sharing results with study participants and others with relevant lived experience. Trial registration ISRCTN12805381 ( https://www.isrctn.com/ISRCTN12805381 ).
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,082 | 0,113 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,003 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,001 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; les deux têtes enseignantes s’accordent sur ce qui est montré ici.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».