End Users’ and Other Stakeholders’ Needs and Requirements in the Development of a Personalized Integrated Care Platform (PROCare4Life) for Older People With Dementia or Parkinson Disease: Mixed Methods Study
Notice bibliographique
Résumé
BACKGROUND: With what has been known as the "triple-win effect", introducing information and communication technologies (ICTs) in the health care of neurodegenerative diseases is beneficial in delaying the need for institutional care, reducing the associated health care costs, reducing the caregiving burden, and improving individuals' quality of life. Nevertheless, the mismatch between the users' expectations and their actual needs remains one of the main challenges that can reduce the usability of technology solutions. Therefore, the European project Personalized Integrated Care Promoting Quality of Life for Older People (PROCare4Life), which aimed to develop an ICT-based platform for all parties involved in the health care of neurodegenerative diseases, adopted a user-centered design approach, where all users are involved from the inception and throughout the platform development and implementation to integrate their needs and requirements in the proposed platform. OBJECTIVE: This paper presents the results of a study on the needs and requirements of the potential end users (older people with neurodegenerative diseases, caregivers, and health care professionals) and other key stakeholders in the development of the PROCare4Life platform. METHODS: A mixed qualitative and quantitative study design was used, including 2 web-based surveys, 40 interviews, and 4 workshops. The study was conducted between April and September 2020 in 5 European countries: Germany, Italy, Portugal, Romania, and Spain. Both data types were analyzed separately and then merged and interpreted, with greater priority placed on qualitative research. RESULTS: A total of 217 participants were recruited; 157 (72.4%) of them completed the web-based surveys (n=85, 54.1% patients and n=72, 45.9% caregivers), and 60 (27.6%) individuals participated in the qualitative research (20/60, 33% health care professionals; 5/60, 8% patients; 5/60, 8% caregivers; and 30/60, 50% key stakeholders). We identified 3 main themes (T): (T1) experiences associated with illness, (T2) thoughts about the platform technology, and (T3) desired properties. Alerts for adverse events, communication tools, reminders, and monitoring are constantly needed functionalities, whereas ease of use, personalization, and user-friendliness are foreseen as necessary features. CONCLUSIONS: This paper identified the key personal, social, and health factors that influence the daily lives of the potential end users and reflected on their needs and expectations regarding the design of the proposed PROCare4Life platform. The collected data were useful for the development of the PROCare4Life platform. Although the combination and collection of features for diverse user groups are typical for integrated care platforms, it results in exponential complexity for designers, developers, and users. Contradicting opinions and several concerns in this study demonstrate that an ICT-integrated care platform should not promise too much for too many. Instead, selection, focus, and, sometimes, restriction to essentials are necessary. Users and other stakeholders should be involved in these decisions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/22463.
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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 | 0,005 | 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 | 0,001 |
| 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 ».