Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives

Elberse, Janneke; Caron-Flinterman, J.F.; Broerse, Jacqueline E W

doi:10.1111/j.1369-7625.2010.00647.x

Cited by 92 publications

(112 citation statements)

References 49 publications

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“…Although this can be an effective approach, this form of representation does not always guarantee that patients' input is taken into account. Patients can be overruled by other members of the board and it can lead to tokenism [12,25].…”

Section: Introductionmentioning

confidence: 99%

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

Elberse¹,

Pittens²,

Buning³

et al. 2012

Health Policy

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Section: Introductionmentioning

confidence: 99%

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

Elberse¹,

Pittens²,

Buning³

et al. 2012

Health Policy

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“…Ainsi, afin d'accéder au sujet sensible de la passion obsessive et des problèmes de jeu, la recherche future pourrait mettre en place une recherche collaborative de type ) patient-partenaire * impliquant des JdP, cette technique étant reconnue pour augmenter la qualité de la recherche. En raison de la complémentarité des connaissances expérientielles des personnes concernées, soit les joueurs, et des experts scientifiques, cette méthode pourrait être envisagée dans les recherches futures (Elberse, Caron-Flinterman et Broerse, 2011;Goodare et Lockwood, 2009) Ces résultats doivent être interprétés à la lumière de certaines limites. Une sélection de joueurs par choix raisonné à partir de l'échantillon de convenance de la cohorte (noms des auteurs masqués pour une révision à l'aveugle) a pu restreindre la diversité des profils des JdP.…”

Section: Discussionunclassified

Être passionné un peu, beaucoup, énormément? Le concept de la passion chez les joueurs de poker, une étude qualitative.

Morvannou

Dufour

Brunelle

et al. 2018

JGI

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La passion est étudiée depuis une quinzaine d’années chez les joueurs de jeu de hasard et d’argent. Elle comprend deux formes, soit la passion obsessive (PO) qui est contrôlante et la passion harmonieuse (PH) qui laisse de la place à d’autres activités du joueur. Les études transversales associent la PO aux problèmes de jeu, ce qui n’est pas le cas de la PH. Toutefois, la pertinence de l’utilisation du concept de passion et son influence sur les comportements de jeu, selon le discours des joueurs, sont totalement méconnues. Les objectifs de cette étude étaient d’examiner la pertinence du concept de passion chez des joueurs poker (JdP) et de comprendre les liens entre les deux formes de passion et les problèmes de jeu. Cette étude qualitative descriptive est la deuxième composante d’une étude mixte séquentielle auprès de JdP du Québec (n=12). L’analyse de contenu thématique a été réalisée en privilégiant la thématisation en continu. Parmi les participants, la majorité a été ou est actuellement passionnée de poker et les deux formes de passion sont des concepts pertinents selon les joueurs. Le fait d’être passionné serait l’un des facteurs influençant les comportements de jeu. Toutefois, un JdP peut continuer à jouer sans être passionné alors que l’on peut également être passionné sans nécessairement jouer fréquemment. Il ne semble donc pas y avoir de lien direct entre la passion et la fréquence de jeu. La pertinence du concept de passion pour les joueurs permet de penser qu’il pourrait être utilisé en prévention ou encore dans le traitement des JdP. Passion among gamblers has been studied for the last decade and a half. There are two forms of passion: obsessive passion (OP), which is controlling, and harmonious passion (HP), which leaves room for the gambler’s other activities. Cross-sectional studies associate OP with gambling problems, which is not the case for HP. The relevance of the concept of passion and passion’s influence on gambling behaviour are, however, uncertain, according to gamblers themselves. The objectives of this study were to examine the relevance of the concept of passion for poker players (PP) and understand the connections between the two forms of passion and gambling problems. This qualitative descriptive study is the second part of a sequential mixed study with PPs in Québec (n=12). The thematic content analysis was conducted using continuous thematization. The majority of the participants were or are currently passionate about poker, and both forms of passion are relevant concepts for these players. According to them, being passionate is one of the behaviours that influences gambling behaviour. A PP may, however, continue to play without being passionate, but also be passionate without necessarily playing frequently. There does not, therefore, seem to be any direct connection between passion and frequency of play. The relevance of the concept of passion for poker players suggests that it may be used preventively or in the treatment of PPs.

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“…The autonomy paradigm aims at emancipating the elderly from the passive situation in which the active ageing paradigm confines them [29,35,38,[46][47][48] and, in order to achieve this objective, it promotes the direct and first-person involvement of the seniors in healthcare decisions as well as in technological design [35,[49][50][51]. The paradigm revolves around the concepts of autonomy and self-determination [35,39,46,47]-or, as Kaufman claims, autonomy as self-determination [20] (p. 47).…”

Section: The Ageing Process: a Literature Reviewmentioning

confidence: 99%

Greener through Grey? Boosting Sustainable Development through a Philosophical and Social Media Analysis of Ageing

Carella

Monachesi

2018

Sustainability

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Sustainable development is challenged by the exponential growth of the older population, which threatens available resources. In this paper, we question current negative views in the ageing debate by considering the ageing process from a philosophical perspective. By focusing on frailty, a feature that is usually associated with old age, we show that ageing can be the means to highlight the constitutive vulnerable condition of human beings which makes them exposed to others. As a result, we redefine the relationship between the human and the natural world as one of co-constitution and reciprocal sustenance and promotion. We move away from the current approach to sustainable development and we suggest a vision in which the concept of care becomes central. We claim, on the basis of social media behavioral analysis, that the elderly could be involved in care practices of other human beings and especially of nature, contributing actively to sustainable development.

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Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives

Cited by 92 publications

References 49 publications

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

Patient involvement in a scientific advisory process: Setting the research agenda for medical products

Être passionné un peu, beaucoup, énormément? Le concept de la passion chez les joueurs de poker, une étude qualitative.

Greener through Grey? Boosting Sustainable Development through a Philosophical and Social Media Analysis of Ageing

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