ADVANCING EQUITY IN LUPUS CLINICAL TRIALS THROUGH COMMUNITY ENGAGEMENT: PERSPECTIVES FROM QUALITATIVE COMMUNITY FEEDBACK SESSIONS WITH CLINICAL TRIAL INVESTIGATORS AND RESEARCH STAFF
Notice bibliographique
Résumé
PV083 / #390 Poster Topic: AS11 - Epidemiology and Public Health Background/Purpose Lupus disproportionately affects racial and ethnic minoritized populations, yet there is a significant disparity between those affected and those enrolled in clinical trials. The aim of the present work is to characterize the perspectives, preferences, and unmet needs of key community members to enhance the participation of underrepresented groups in lupus clinical trials. Methods Three Community Feedback Sessions (CFSs) were held over Zoom with experienced investigators and research staff from prominent academic lupus clinical trial centers in North America in January 2024. CFSs were led by trained facilitators utilizing discussion guides developed to gather actionable feedback on: challenges and facilitators for recruiting and enrolling racial and ethnic minority patients into lupus clinical trials; effective communication with diverse patients about clinical trials; and strategies and solutions to promote participation of underrepresented patients in lupus clinical trials. The sessions were recorded, and feedback was summarized to explore key takeaways and recommendations to advance equity in lupus clinical trials. Results Nine investigators and 7 research staff participated in the feedback sessions, representing 14 centers across North America. Key barriers discussed included socioeconomic factors and inadequate consideration of patient’s time and resource constraints within clinical trial designs (Figure 1). Illustrative quotes were selected to portray emergent perspectives, outlined in Figure 2. Building relationships with patients and involving trusted community partners (eg, primary care providers, community health workers, patient advocates) was frequently emphasized as a productive approach to addressing historical and current mistrust in research and medicine. Respondents identified collaborative approaches to enhance continual education and patient engagement to improve communication about clinical trials within and between clinical professionals, patients, and communities. Investigator discussions focused on mentorship and innovative communication methods, while research staff emphasized specific training programs and resources for better understanding lupus and addressing community concerns. All discussions highlighted the necessity of incorporating culturally and linguistically appropriate language and diction when discussing clinical trials, particularly for participants who reported serving large Spanish-speaking patient populations. Figure 1. Perspectives from Investigators (n=9) and Research Staff (n=7) on Barriers and Facilitators to Advance Diversity and Representation in Lupus Clinical Trials Figure 2. Illustrative Quotes from Investigators and Research Staff Perspectives Advancing Diversity and Representation in Lupus Clinical Trials Conclusions Addressing the underrepresentation of diverse populations in lupus clinical trials requires a multifaceted approach. While investigators and research staff shared common concerns and suggestions for advancing equity in lupus clinical trials, each group contributed unique insights and identified unmet needs based on their roles and prior experiences. Engaging and incorporating perspectives from the entire clinical trial research team can help identify comprehensive and actionable strategies to promote equity in lupus clinical trials.
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 machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,155 | 0,181 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,003 | 0,002 |
| Études des sciences et des technologies | 0,023 | 0,020 |
| Communication savante | 0,010 | 0,008 |
| Science ouverte | 0,004 | 0,017 |
| Intégrité de la recherche | 0,005 | 0,009 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 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; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».