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).

/pdf/engaging-patients-to-improve-quality-of-care-a-systematic-3q91ifvqem.pdf

Engaging patients to improve quality of care: a systematic review

https://www.rcpjournals.org/content/clinmedicine/3/6/589.full.pdf

The autonomous patient: ending paternalism in medical care

Individuals with cancer and their families assume responsibility for management of cancer as an acute and chronic disease. Yet, cancer lags other chronic diseases in its provision of proactive self-management support in routine, everyday care leaving this population vulnerable to worse health status, long-term disability, and poorer survival. Enabling cancer patients to manage the medical and emotional consequences and lifestyle and work changes due to cancer and treatment is essential to optimizing health and recovery across the continuum of cancer. In this paper, the Global Partners on Self-Management in Cancer puts forth six priority areas for action: Action 1: Prepare patients and survivors for active involvement in care; Action 2: Shift the care culture to support patients as partners in cocreating health and embed self-management support in everyday health-care provider practices and in care pathways; Action 3: Prepare the workforce in the knowledge and skills necessary to enable patients in effective self-management and reach consensus on core curricula; Action 4: Establish and reach consensus on a patient-reported outcome system for measuring the effects of self-management support and performance accountability; Action 5: Advance the evidence and stimulate research on self-management and self-management support in cancer populations; Action 6: Expand reach and access to self-management support programs across care sectors and tailored to diversity of need and stimulation of research to advance knowledge. It is time for a revolution to better integrate self-management support as part of high-quality, person-centered support and precision medicine in cancer care to optimize health outcomes, accelerate recovery, and possibly improve survival.

Management of Cancer and Health After the Clinic Visit: A Call to Action for Self-Management in Cancer Care

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.

/pdf/patient-partnership-in-quality-improvement-of-healthcare-4b7a6i4c63.pdf

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

YouTube is the second most visited website in the world No studies to date have characterized and evaluated YouTube videos on colorectal cancer (CRC) although these videos could influence patient decision-making, notably regarding screening and prevention This study aims to report the characteristics and quality of these videos as patient education resources for CRC YouTube’s search engine was queried with different search phrases relating to CRC The first two pages of each search result were analyzed Two specialists devised a critical appraisal tool with a list of criteria to assess the videos Quantitative YouTube parameter analyses and criteria assessment were performed Inter-rater agreement was assessed between three raters A total of 46 videos were eligible to be included in the study The videos were on average 4:51 ± 3:27 min long The videos had 10 times as many likes as dislikes Less than half the videos discussed risk factors and protective factors Only 41% of videos mentioned screening tests and only about a quarter discussed them Palliative care was only mentioned in 2% of videos A single video could obtain a perfect score on the critical appraisal tool Length was the unique parameter associated with a high score on the criteria list There is thus a need for more authoritative and comprehensive videos easily identifiable by the patients Video popularity is not associated with comprehensiveness Currently, YouTube might not be an education resource for CRC suited to every patient

/pdf/youtube-videos-as-a-source-of-information-on-colorectal-2dv0p5vkxs.pdf

YouTube Videos as a Source of Information on Colorectal Cancer: What Do Our Patients Learn?

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

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.

Béatrice Débarges

Papers

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

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