Engagement of People With Lived Experience in Spinal Cord Injury to Address Innovation Priorities
Notice bibliographique
Résumé
INTRODUCTION: The involvement of people with lived experience (PLEX) of spinal cord injury (SCI) is not common during medical innovation design, research and commercialization processes. To address the SCI community's needs and priorities, companies developing SCI-related innovations must include individuals living with SCI in all steps of the process. This study explores the importance of the involvement of PLEX groups in identifying key themes and priorities for SCI-related devices and therapeutics. METHODS: Focus groups were held virtually as part of the Praxis Innovation Program. Members of the Praxis PLEX team facilitated 90-min discussions with PLEX participants. A discussion guide was used which included the following topics: existing challenges & solutions, initial product impressions, likelihood of use, acceptance by SCI community, reimbursement/payment challenges & solutions, and potential improvements. Researchers observed the focus groups and took contemporaneous notes. Following each focus group, a deidentified summary was synthesized using researchers' notes, facilitator's key messages, and an audio transcript. The summaries from all focus groups were analyzed and themes common across the focus groups were identified. RESULTS: Twenty-seven focus groups were conducted between 2020 and 2023, with an average of seven participants per session. Individuals from Canada, the United States, New Zealand, and Australia participated. Participants ranged in age from 21 to 73 years. 58% were male and 42% were female. Fourteen percent of participants had lived with SCI for less than 5 years, 17% for 6-10 years, 12% for 11-15 years, and 57% for greater than 16 years. Among participants, 59% were tetraplegic, while 41% were paraplegic. Six global themes emerged that reflected PLEX's considerations for new technologies; purchase and use decisions were identified in 96% of the focus groups, purpose in 93%, design in 89%, communication in 85%, time factors in 81%, and adaptation considerations in 81%. CONCLUSION: This study describes the results of using a systematic approach and framework for SCI PLEX focus groups during the research, design and commercialization process. The themes identified: purchase and use decisions, purpose, design, communication, time factors, and adaptation considerations, are important topics regarding SCI innovations. Future studies should focus on measuring the impact of patient/PLEX engagement by comparing the success of devices that successfully reach consumer market after collaboration with PLEX versus products that are developed independently. PLEX AND OR PUBLIC CONTRIBUTION: Members of the Praxis PLEX team provided significant feedback and input on developing the focus group discussion guides, facilitating the focus groups, interpreting the data, and producing the manuscript. They were all included as co-authors.
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 | 0,000 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,002 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| 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; un appel candidat d’une seule tête enseignante, 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 ».