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

© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health-related research. Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co-design workshops, we tested evidence-based resources based on the review findings. Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power-focused; priority-setting; study-focused; report-focused; and partnership-focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence-based facilitator notes for a “build your own framework” co-design workshop. Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off-the-shelf framework may be less useful than a menu of evidence-based resources which stakeholders can use to co-design their own frameworks.

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Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.

Coproduction, a collaborative model of research that includes stakeholders in the research process, has been widely advocated as a means of facilitating research use and impact. We summarise the arguments in favour of coproduction, the different approaches to establishing coproductive work and their costs, and offer some advice as to when and how to consider coproduction. Despite the multiplicity of reasons and incentives to coproduce, there is little consensus about what coproduction is, why we do it, what effects we are trying to achieve, or the best coproduction techniques to achieve policy, practice or population health change. Furthermore, coproduction is not free risk or cost. Tensions can arise throughout coproduced research processes between the different interests involved. We identify five types of costs associated with coproduced research affecting the research itself, the research process, professional risks for researchers and stakeholders, personal risks for researchers and stakeholders, and risks to the wider cause of scholarship. Yet, these costs are rarely referred to in the literature, which generally calls for greater inclusion of stakeholders in research processes, focusing exclusively on potential positives. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders. First, we recommend identifying specific motivations for coproduction and clarifying exactly which outcomes are required for whom for any particular piece of research. Second, we suggest selecting strategies specifically designed to enable these outcomes to be achieved, and properly evaluated. Finally, in the absence of strong evidence about the impact and process of coproduction, we advise a cautious approach to coproduction. This would involve conscious and reflective research practice, evaluation of how coproduced research practices change outcomes, and exploration of the costs and benefits of coproduction. We propose some preliminary advice to help decide when coproduction is likely to be more or less useful.

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The dark side of coproduction: do the costs outweigh the benefits for health research?

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

Background Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. Objective Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. Methods We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. Results In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. Conclusion A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

https://www.onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12804

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

This research focuses on the perception of patients who participated in Continuous Quality Improvement Committees (CIC) regarding their contribution, lessons learned, and challenges encountered. The committees are engaged in a care partnership approach where patients are recognized for their experiential knowledge and treated as full members of the clinical team. Based on patient interviews, we conclude tha experience. They identify themselves as real partners in the care process and are grateful for the opportunity to improve the care provided to other patients by using their own experience and by brin relationship, particularly in terms of communication. They also become better acquainted with the complexity of the health system and its organization. However, their participation in CICs raised two challenges. The availability, as their professional schedules did not always allow them to participate in meetings. The second was their frustration with the slow decision-making process and implementation of necessary measures for quality improvement of healthcare and services. This study highlights the contribution of successful patient participation to quality of care improvement.

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Patient partnership in quality improvement of healthcare services: Patients' inputs and challenges faced

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.

Vincent Dumez

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

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools

Patient partnership in quality improvement of healthcare services: Patients' inputs and challenges faced

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