WFH Guidelines for the Management of Hemophilia, 3rd edition

To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services. We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients’ experiences of being engaged. Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign—discrete products largely derived from low-level engagement (consultative unidirectional feedback)—whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients’ experiences of the engagement process (n = 12; 25%). While most experiences were positive—increased self-esteem, feeling empowered, or independent—some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made. Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients’ experiences of the engagement process and whether these outcomes translate into improved quality of care. N/A (data extraction completed prior to registration on PROSPERO).

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Engaging patients to improve quality of care: a systematic review

Patient-Centered Medicine: Transforming the Clinical Method

La pensée sauvage

The prevalence of chronic diseases today calls for new ways of working with patients to manage their care. Although patient-centered approaches have contributed to significant advances in care and to treatments that more fully respect patients' preferences, values, and personal experiences, the reality is that health care professionals still hold a monopoly on the role of healer. Patients live with their conditions every day and are experts when it comes to their own experiences of illness; this expertise should be welcomed, valued, and fostered by other members of the care team. The patient-as-partner approach embodies the ideal of making the patient a bona fide member of the health care team, a true partner in his or her care. Since 2010, the University of Montreal, through the Direction of Collaboration and Patient Partnership, has embraced this approach. Patients are not only active members of their own health care team but also are involved in research and provide valuable training to health sciences students. Including patients as full partners in the health care team entails a significant shift in both the medical practice and medical education cultures. In this perspective, the authors describe this innovative approach to patient care, including the conceptual framework used in its development and the main achievements of patient partners in education, health care, and research.

The patient-as-partner approach in health care: a conceptual framework for a necessary transition.

Dans le souci d’ameliorer la sante de la population et d’ameliorer la qualite des soins et des services delivres par le systeme de sante, une des voies prometteuses est l’engagement des patients a tous les niveaux du systeme de sante ainsi que dans la formation des professionnels de la sante. Depuis 2010, un nouveau modele relationnel, base sur le partenariat entre les patients et les professionnels de la sante, a ete developpe a la Faculte de medecine de l’Universite de Montreal. Ce modele de partenariat patient s’appuie sur la reconnaissance des savoirs experientiels du patient, issus de la vie avec la maladie, et complementaires des savoirs scientifiques des professionnels de la sante. Il s’inscrit dans un continuum d’engagement des patients et peut s’appliquer dans les milieux de soins, de la formation des professionnels, de l’enseignement et de la recherche. Nous exposerons dans cet article, les fondements theoriques du partenariat patient, puis comment ce nouveau modele peut etre mis en œuvre aux niveaux clinique, organisationnel et systemique et quels en sont les facteurs de reussite tant du cote des patients que des professionnels de la sante. Le « Montreal Model », en rendant le patient un partenaire incontournable pour toutes les decisions qui le concernent et comme expert de l’organisation des soins, offre aujourd’hui des perspectives pertinentes pour la gestion des maladies chroniques. Cette approche devrait avoir un impact important sur la sante des populations en ameliorant la sante physique, psychologique et le bien-etre des personnes. Dans ce cadre, plusieurs programmes de recherches sont actuellement en cours pour en evaluer l’impact.

https://www.cairn.info/load_pdf.php?ID_ARTICLE=SPUB_150_0041&download=1

Le « Montreal model » : enjeux du partenariat relationnel entre patients et professionnels de la santé

Les schemas de production et de reconnaissance des savoirs dans le domaine de la sante se modifient profondement : pour les pathologies chroniques notamment, les expertises propres aux malades emergent comme sources de savoirs : les strategies classiques d'education therapeutique, proposees par les soignants pour ameliorer l'observance des traitements, se doublent de nouveaux courants issus des communautes de malades qui rattachent les maladies a des formations experientielles, voire a des episodes autodidactes Apres avoir ete resituee historiquement comme constitutive de l'idee de democratie sanitaire, cette reconnaissance des savoirs experientiels des patients - en marche dans de multiples lieux - fait ici l'objet d'une revue de litterature qui en regarde les enjeux epistemologiques, therapeutiques et de pouvoir

https://hal.archives-ouvertes.fr/hal-00645113/document

Construction et reconnaissance des savoirs expérientiels des patients

A promising approach to improve the population's health and the quality of care and services provided by the health system consists of patient engagement at all levels of the health system together with training of health professionals. Since 2010, a new rational model based on the partnership between patients and healthcare professionals has been developed at the University of Montreal's Faculty of Medicine. This patient partnership model is based on the recognition of the patient's experiential knowledge gained from living with a disease, which is complementary to the healthcare professional's scientific knowledge. This partnership is part of a continuum of patient engagement and can be applied in healthcare, professional training, education and research settings. This article describes the theoretical basisfor patient partnerships and how this new model can be implemented in clinical, organizational and systemic levels, as well as the success factors in both patients and healthcare professionals. The Montreal Model provides relevant outlooks for chronic disease management by making patients essential partners in all decisions affecting them and by treating them as experts in the organisation of care. This model should have a significant impact on the population's health by improving physical, psychological health, as well as the patient's well-being. As part of this new framework, several research programs are currently underway to evaluate the impact of this model.

The Montreal model: the challenges of a partnership relationship between patients and healthcare professionals

Le projet de cette recherche vise a questionner les enjeux : existentiel, relationnel, institutionnel et socio anthropologiques reveles par le patient formateur. Les objectifs operationnels de cette these tendent vers la comprehension de la part de savoirs des malades et leurs interactions avec celle des professionnels de la sante, leur transmissibilite et des processus en œuvre tant a titre : individuel, collectifs que societaux dans le domaine de la sante et des systemes de sante. Les themes theoriques abordes concernent le concept de l’ethique du Care, les sciences de l’education, les regards sociologiques et anthropologiques concernant le sujet, et pour cela sont abordes les champs de la formation et des apprentissages des adultes, les concepts de promotion de la sante et d’education therapeutique comme l’histoire du savoir des malades et des nouvelles figures qui ont emerge. Au plan epistemologique, cette recherche s’inscrit dans la demarche qualitative, comprehensive, autour de la theorie ancree, a partir d'approches : d'observation directe, participative et de recherche-action. Au plan methodologique, le mode de recueil des donnees s’appuie : sur des entretiens de patients, patients formateurs vivant avec une ou des maladies chroniques qui ont realise un retour reflexif, des initiateurs de dispositifs innovants, triangules avec des immersions de terrain et des publications sur les environnements approches lorsque ces dernieres existaient. L’interpretation des donnees eclaire les enjeux questionnes a des niveaux micro, meso et macro, et abouti sur une proposition d’elaboration theorique et pratique d’un nouveau metier de la sante, celui de patient formateur.

Luigi Flora

Papers

The patient-as-partner approach in health care: a conceptual framework for a necessary transition.

Le « Montreal model » : enjeux du partenariat relationnel entre patients et professionnels de la santé

Construction et reconnaissance des savoirs expérientiels des patients

The Montreal model: the challenges of a partnership relationship between patients and healthcare professionals

Le patient formateur : élaboration théorique et pratique d’un nouveau métier de la santé