Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review.

BACKGROUND: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. METHODS: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). FINDINGS: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty-four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher-income countries (n = 51). Community-based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist-utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). CONCLUSIONS: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. PATIENT AND PUBLIC CONTRIBUTION: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. REVIEW REGISTRATION: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/).

Integrating perspectives of transgender and gender-diverse youth, family members, and professionals to support their health and wellbeing - a mixed-method study protocol.

BACKGROUND: The current literature highlights a strong link between the poor health outcomes of transgender and gender diverse (TGD) individuals and their negative experiences in various areas of life. Most of these publications rely on adults' memories, lacking a focus on the current experiences and needs of young transgender and gender-diverse individuals. Furthermore, previous studies on support for these young people often solely consider the perspectives of TGD adults or professionals and rarely involve parents' viewpoints. METHODS: This study will use a mixed sequential method with a participatory approach. Firstly, the qualitative phase will explore the difficulties and needs of TGD (15-20 years old) and of the families and professionals who support them. Results from this part will be used to develop the questionnaire for the quantitative phase, with the help of a community board. Secondly, based on participatory epidemiological research, the quantitative phase will use an intersectional perspective to measure the impact of individual and structural factors on the quality of life and well-being of transgender and gender-diverse young people. Finally, a co-creation phase will be undertaken to formulate recommendations based on the results of the first two phases. DISCUSSION: This research aims at better understanding the influence of gender identity on the quality of life and health of TGD young people and their families and to identify protective and risk factors that affect their vulnerabilities. ETHICS AND DISSEMINATION: This study has been approved by the Ethics Committee of the Erasme Faculty Hospital (CCB B4062023000140). As this research is participatory and part of a PhD dissertation, we aim to disseminate the results through our partners' networks and structures locally, and internationally through conferences and peer-reviewed journals.

An organizing framework to break down Western-centric views of knowledge in North-South research.

Global challenges, such as climate change, persistent poverty, and food insecurity are complex problems. These societal, environmental, and economic challenges cross scientific disciplines, communities, and geographies, requiring interdisciplinary, North-South solutions. Nevertheless, prevailing sustainability science responses are Western-centric. Some seminal studies have attempted to understand and engage with diverse knowledge systems. These include decolonial and Indigenous methodologies, such as "Two-Eyed Seeing", which emphasizes the importance of using both Western and Indigenous knowledge to gain a more comprehensive understanding of the world, and participatory action research, which highlights the importance of involving participants in the research process and promoting social change through collaborative effort. However, apart from in-country research collaborations with traditional Indigenous knowledge, most North-South studies overlook the role or influence of Western-centric views and therefore fail to recognize and incorporate diverse worldviews and knowledge systems. This may, in part, reflect the tendency to categorize research into disciplinary silos, but more likely is the unintentional, yet prevalent, view that Western science is "objective and neutral." As more scholars from multiple disciplines and geographies focus on interdisciplinary North-South research, it is critical that researchers reflect on dominant research approaches and knowledge production. Studies can co-construct, reproduce, or control the forms of knowledge generated-whether intentional or unintentional. This paper presents an organizing framework to help researchers navigate, understand, and engage with diverse forms of knowledge in undertaking North-South research. The framework draws on empirical observations from the authors' interdisciplinary research and from empirical cross-cultural literature. It comprises three contextual levels of influence, featuring guiding principles and subsequent practical actions researchers can use to navigate the complexities of knowledge co-construction in North-South research. Supplementary Information: The online version contains supplementary material available at 10.1007/s11625-024-01478-6.

Adapting and Evaluating an AI-Based Chatbot Through Patient and Stakeholder Engagement to Provide Information for Different Health Conditions: Master Protocol for an Adaptive Platform Trial (the MARVIN Chatbots Study).

BACKGROUND: Artificial intelligence (AI)-based chatbots could help address some of the challenges patients face in acquiring information essential to their self-health management, including unreliable sources and overburdened health care professionals. Research to ensure the proper design, implementation, and uptake of chatbots is imperative. Inclusive digital health research and responsible AI integration into health care require active and sustained patient and stakeholder engagement, yet corresponding activities and guidance are limited for this purpose. OBJECTIVE: In response, this manuscript presents a master protocol for the development, testing, and implementation of a chatbot family in partnership with stakeholders. This protocol aims to help efficiently translate an initial chatbot intervention (MARVIN) to multiple health domains and populations. METHODS: The MARVIN chatbots study has an adaptive platform trial design consisting of multiple parallel individual chatbot substudies with four common objectives: (1) co-construct a tailored AI chatbot for a specific health care setting, (2) assess its usability with a small sample of participants, (3) measure implementation outcomes (usability, acceptability, appropriateness, adoption, and fidelity) within a large sample, and (4) evaluate the impact of patient and stakeholder partnerships on chatbot development. For objective 1, a needs assessment will be conducted within the setting, involving four 2-hour focus groups with 5 participants each. Then, a co-construction design committee will be formed with patient partners, health care professionals, and researchers who will participate in 6 workshops for chatbot development, testing, and improvement. For objective 2, a total of 30 participants will interact with the prototype for 3 weeks and assess its usability through a survey and 3 focus groups. Positive usability outcomes will lead to the initiation of objective 3, whereby the public will be able to access the chatbot for a 12-month real-world implementation study using web-based questionnaires to measure usability, acceptability, and appropriateness for 150 participants and meta-use data to inform adoption and fidelity. After each objective, for objective 4, focus groups will be conducted with the design committee to better understand their perspectives on the engagement process. RESULTS: From July 2022 to October 2023, this master protocol led to four substudies conducted at the McGill University Health Centre or the Centre hospitalier de l'Université de Montréal (both in Montreal, Quebec, Canada): (1) MARVIN for HIV (large-scale implementation expected in mid-2024), (2) MARVIN-Pharma for community pharmacists providing HIV care (usability study planned for mid-2024), (3) MARVINA for breast cancer, and (4) MARVIN-CHAMP for pediatric infectious conditions (both in preparation, with development to begin in early 2024). CONCLUSIONS: This master protocol offers an approach to chatbot development in partnership with patients and health care professionals that includes a comprehensive assessment of implementation outcomes. It also contributes to best practice recommendations for patient and stakeholder engagement in digital health research. TRIAL REGISTRATION: ClinicalTrials.gov NCT05789901; https://classic.clinicaltrials.gov/ct2/show/NCT05789901. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/54668.

A municipal health center's co-constructed therapeutic patient education program for patients with single or multiple morbidities / Co-construction d'un dispositif d'ETP mono et polypathologique dans un centre municipal de santé

Introduction: The accessibility of Therapeutic Patient Education (TPE) is essential to reduce social inequalities and to meet the challenges posed by the increase in chronic diseases. In France, the distribution of TPE throughout the territory is heterogeneous and patients still lack sufficient access. With these perspectives in mind, a municipal health center has developed an innovative TPE device by involving concerned patients from the outset. Objectives: The objectives of this article are to present the methodology implemented to co-construct a TPE program for patients with one or more prevalent diseases in the territory, as well as the results of the co-construction. Methods: Creation of a project team with various actors: patients, health professionals, administrators, researchers. Organization of synchronous and asynchronous times. Results: Four meetings and numerous exchanges made it possible to: define the common values and operating rules of the project team, reflect on the coordination of the care pathway, identify the specific and shared needs of patients affected by type 2 diabetes, arterial hypertension and/or obesity, agree on the principles of the device. Conclusion: The advantages of this device were discussed: flexible organization with numerous links with local actors, development of partnerships, expansion of the population concerned. Questions and difficulties were encountered, such as the coordination of actors and the representation of partner patients for the targeted diseases. This device will be tested and evaluated, mainly with an objective of improving it.

Introduction: L'accessibilité de l'Éducation Thérapeutique du Patient (ETP) est essentielle pour contribuer à une réduction des inégalités sociales et répondre aux défis posés par l'accroissement des maladies chroniques. En France, la répartition de l'offre d'ETP sur le territoire est inhomogène et les patients y occupent une place encore trop modeste. Dans ces perspectives, un centre municipal de santé a élaboré un dispositif innovant d'ETP en impliquant, dès le début, des patients concernés. Objectifs: Les objectifs de cet article sont de présenter la méthodologie mise en œuvre pour co-construire un dispositif d'ETP pour des patients porteurs d'une ou de plusieurs maladies prévalentes sur le territoire, ainsi que les résultats de la co-construction. Méthodes: Constitution d'une équipe projet avec divers acteurs : patients, professionnels de santé, administratifs, chercheurs. Organisation de temps synchrones et asynchrones. Résultats: Quatre réunions et de nombreux échanges ont permis de : définir les valeurs communes et les règles de fonctionnement de l'équipe projet, réfléchir sur la coordination du parcours de soins, identifier des besoins propres et partagés des patients touchés par le diabète de type 2, l'hypertension artérielle et/ou l'obésité, se mettre d'accord sur les principes du dispositif. Conclusion: Ce dispositif présente des avantages certains : organisation souple avec de nombreux liens avec les acteurs locaux, développement du partenariat, élargissement de la population concernée. Néanmoins, des questionnements et des difficultés ont été rencontrés comme la coordination des acteurs et la représentation des patients partenaires pour les maladies ciblées. Ce dispositif sera expérimenté et évalué principalement en vue de son amélioration.

Creating synergies among education/research, practice, and policy environments to build capacity for the scholar role in occupational therapy and physiotherapy in the Canadian context.

Scholarly practice (SP) is considered a key competency of occupational therapy and physiotherapy. To date, the three sectors-education/research, practice, and policy/regulation-that support SP have been working relatively independently. The goals of this project were to (a) understand how representatives of the three sectors conceptualize SP; (b) define each sector's individual and collective roles in supporting SP; (c) identify factors influencing the enactment of SP and the specific needs of how best to support SP; and (d) co-develop goals and strategies to support SP across all sectors. We used interpretive description methodology. Consistent with an integrated knowledge translation approach, partners representing the three sectors across Canada recruited individuals from each sector, developed the content and questions for three focus groups, and collected and analyzed the data. Inspired by the Consolidated Framework for Implementation Research, we developed the questions for the second focus group. We analyzed the data using an inductive thematic analysis method. Thirty-nine participants from the three sectors participated. Themes related to participants' conceptualization of SP included (a) ongoing process, (b) reflective process, (c) broad concept, and (d) collective effort. Themes describing factors influencing and supporting SP were (a) recognition, (b) appropriate conceptualization, (c) social network, (d) accessibility to resources, and (e) forces outside of practitioners' effort. Goals to support SP included (a) further recognizing SP, (b) sustaining SP competency, and (c) ensuring access to information. SP requires collaborative and integrated intersectoral support and further recognition of its importance through the collaboration of multiple stakeholders.

How to integrate a patient partner into a care team? / Comment intégrer un patient partenaire dans une équipe de soins ?

Introduction: It is not rare anymore to find patients with knowledge and experience of a care pathway integrating a team of health professionals in order to improve the quality and relevance of their peers' care pathways. Purpose of research: The aim of this article is to propose practical methodological answers and structuring questions to institutions and any health actor interested in integrating a Patient Partner (PP) into a team of health professionals. Results: The results of an action-research (AR) carried out within a Cancer Treatment Centre (CTC) provide both a methodological framework and answers to the questions raised by this experimentation: How did the team and the PP organize themselves to implement the mission of peer support? What evaluations of the project should be put in place? How does everyone find their place in the project? And finally, what are the operational procedures, limits, and levers for integrating the PP into the team? Conclusions: In the discussion section, we propose a model of experimentation based on AR, highlighting the main drivers and the interventions that feed them. Finally, we share a series of structuring questions arising from the co-construction work carried out by the people involved, which allowed us to build our action plan for the integration of a PP in the care team at the Rennes CTC, and which seems to us sufficiently generalizable to be tested and used by other teams and in other contexts.

Introduction: Il n'est plus rare aujourd'hui de rencontrer des patients ayant la connaissance et l'expérience d'un parcours de soins, intégrer une équipe de professionnels de santé afin d'améliorer la qualité et la pertinence du parcours de soins de leurs pairs. But de l'étude: L'objectif de cet article est de proposer, aux institutions et à tout acteur de la santé qui envisagent d'intégrer un patient partenaire (PP) dans une équipe de professionnels de santé, des réponses méthodologiques pratiques et des questions structurantes pouvant soutenir leur expérimentation. Résultats: Les résultats issus d'une recherche-action (R-A) menée au sein d'un centre de lutte contre le cancer permettent à la fois de fournir un cadre méthodologique de coconstruction et d'apporter des réponses aux questions soulevées par les acteurs au cours de cette expérimentation : comment l'équipe et le PP se sont-ils organisés pour mettre en œuvre la mission de pair-accompagnant ? Quelles évaluations du projet mettre en place ? Comment chacun trouve-t-il sa place dans le projet ? Et finalement, quelles sont les modalités opérationnelles, les limites et leviers de l'intégration du patient partenaire dans l'équipe ? Nous proposons dans la partie discussion un modèle de l'expérimentation issu de la R-A mettant en exergue les drivers principaux ainsi que les interventions qui les nourrissent. Conclusions: Enfin, nous partageons une série de questions structurantes issues du travail de coconstruction des acteurs, qui nous a permis d'établir notre plan d'action pour l'intégration d'une PP dans l'équipe de soins au CLCC de Rennes (35), et qui nous semble suffisamment généralisable pour être testée et utilisée par d'autres équipes et dans d'autres contextes.

Recognizing Relational Interactions with Social Institutions in Refugee Children's Experiences of Intertwining Vulnerability and Agency.

In this paper, we examine relational interactions between refugee children and social institutions, building the case for the recognition of the co-occurrence and intertwining of vulnerability and agency in children's experiences in diverse refugee situations. This developmental relational approach offers refinement of a general relational worldview by specifying how vulnerable and agentic experiences are co-constructed by children and adult individuals and institutions. We analyze the conceptual roots of vulnerable and agentic experiences, and use the concept of co-construction to specify the processes and outcomes of interactive relational experiences. Evidence from example studies of the intertwining of vulnerability and agency in specific refugee situations demonstrates how refugee children contribute to power-oriented experiences. Due recognition of the relational co-construction of intertwining vulnerable and agentic experiences provides a basis for refining generalized relational observations, and a fine-grained basis for developing policies and procedures to dispel ambivalence to refugee children and to change inequitable policies and practices.

The co-construction of a reading assessment measure with adults with Down syndrome: a meaningful literacy approach.

Introduction: The need to develop appropriate measures of broad-based reading-related literacy skills for adults with Down syndrome has been highlighted in the literature. In this study we aimed to co-construct a valid and reliable assessment measure that can be used to document meaningful everyday reading, in adolescents and adults with Down syndrome. Methods: The study was carried out in two stages. Stage 1 used an inclusive participatory design in which individuals with Down syndrome were research collaborators (n = 46). Items to be included in the measure were identified and ecological, face and content validity were established through an iterative process. In stage 2 we examined the reliability of the tool and explored potential relationships between meaningful reading score and (1) age, (2) receptive vocabulary, and (3) reading ability as measured by standardized assessments. In addition, we profiled what a pilot cohort of adults with Down syndrome read (n = 33) and how they experience reading in their everyday lives. Results: Results showed that 46 items were generated for inclusion in the Meaningful Reading Measure (MRM). Our preliminary data showed that the tool has internal and external reliability and ecological and content validity. There were no associations between meaningful reading score and any of the other variables examined. There was considerable variability in items read (range 12-44) which reflected a broad range of reading practices. Adults with Down syndrome identified the importance of reading as a pleasurable activity and as something that aids learning. Conclusion: The MRM developed here can be used (1) as a reading intervention outcome measure to complement existing standardized tools, (2) to profile meaningful reading in adults with Down syndrome, (3) to guide reading module content, and (4) to capture change in adults' perceptions of themselves as readers. Future work is needed to establish the tool's sensitivity to change over time.

Co-development of a school-based and primary care-based multicomponent intervention to improve HPV vaccine coverage amongst French adolescents (the PrevHPV Study).

INTRODUCTION: Despite various efforts to improve human papillomavirus (HPV) vaccine coverage in France, it has always been lower than in most other high-income countries. The health authorities launched in 2018 the national PrevHPV research programme to (1) co-develop with stakeholders and (2) evaluate the impact of a multicomponent complex intervention aimed at improving HPV vaccine coverage amongst French adolescents. OBJECTIVE: To describe the development process of the PrevHPV intervention using the GUIDance for rEporting of intervention Development framework as a guide. METHODS: To develop the intervention, we used findings from (1) published evidence on effective strategies to improve vaccination uptake and on theoretical frameworks of health behaviour change; (2) primary data on target populations' knowledge, beliefs, attitudes, preferences, behaviours and practices as well as the facilitators and barriers to HPV vaccination collected as part of the PrevHPV Programme and (3) the advice of working groups involving stakeholders in a participatory approach. We paid attention to developing an intervention that would maximise reach, adoption, implementation and maintenance in real-world contexts. RESULTS: We co-developed three components: (1) adolescents' and parents' education and motivation using eHealth tools (web conferences, videos, and a serious video game) and participatory learning at school; (2) general practitioners' e-learning training on HPV using motivational interviewing techniques and provision of a decision aid tool and (3) easier access to vaccination through vaccination days organised on participating middle schools' premises to propose free of charge initiation of the HPV vaccination. CONCLUSION: We co-developed a multicomponent intervention that addresses a range of barriers and enablers of HPV vaccination. The next step is to build on the results of its evaluation to refine it before scaling it up if proven efficient. If so, it will add to the small number of multicomponent interventions aimed at improving HPV vaccination worldwide. PATIENT OR PUBLIC CONTRIBUTION: The public (adolescents, their parents, school staff and health professionals) participated in the needs assessment using a mixed methods approach. The public was also involved in the components' development process to generate ideas about potential activities/tools, critically revise the successive versions of the tools and provide advice about the intervention practicalities, feasibility and maintenance.

Age and gender in gerontechnology development : Emphasizing the need for an intersectional approach.

BACKGROUND: The challenges of the digital divide emerge with new technologies being created to address the needs of the increasing older population. This divide is influenced by the social dimensions of age and gender, often resulting in impaired participation of the affected demographic groups. Gerontechnological designs in which inadequate attention is paid to gender and old age easily run the risk of reproducing gender-specific and age-specific stereotypes. An approach to counteracting the digital exclusion of technology users is the introduction of co-creative methods of participatory design (PD). As there are diverse challenges when putting these methods into practice regarding their claim to be more socially inclusive and democratizing technology development, it is necessary to investigate the effect that age and gender could play when considering PD in gerontechnology. OBJECTIVE: This article aims to shed light on the intersection of age and gender as dimensions of horizontal inequalities in gerontechnology development to support the further development of co-creation practices. CONCLUSION: The PD approaches can be regarded as suitable methodologies to descript age and gender in technology development as long as they are enhanced by a critical awareness of gendered and ageist patterns in society and technology development. The intersectional approach can contribute to further understanding of how current gerontechnology development practices promote the reinforcement and challenging of dominant discourses on old age and gender.

Co-created community contracts support biosecurity changes in a region where African swine fever is endemic - Part II: Implementation of biosecurity measures.

Smallholder subsistence pig production is common in Uganda and African swine fever (ASF) is endemic in the country, with its spread driven by human activities along the smallholder value chain. Previous research in the study area has revealed that many stakeholders are aware of how ASF is spread, its prevention and control, and have a generally positive attitude towards biosecurity. Despite this, even basic biosecurity is largely lacking. Costs, as well as a lack of adaptation to the local context, culture and traditions have been identified as factors hindering biosecurity implementation. Community engagement and local ownership of disease problems are increasingly recognised as important for improving disease prevention and control. The objective of this study was to investigate the capacity of participatory action at community level with broad inclusion of stakeholders to improve biosecurity in the smallholder pig value chain. Specific attention was paid to participants' perceptions and experiences of implementing the biosecurity measures included in their co-created community contracts. The study was conducted in Northern Uganda in villages purposively selected on the basis of previous occurrences of ASF. In each village, farmers and traders were also purposively selected. At a first meeting, basic information about ASF was shared and participants presented with a list of biosecurity measures adapted for farmers and traders respectively. Participants discussed each measure in farmer and trader subgroups, decided on the measures to implement for one year, and signed a community contract to this effect. The following year, interviews were again undertaken and implementation support given. Interview data were coded and thematically analysed. Each subgroup chose a minimum of three and a maximum of nine measures, with wide variations between villages in their selection of measures. At the follow-ups, none of the subgroups had fully implemented what had been agreed in their contract, but all had changed some of their biosecurity routines. Some frequently recommended biosecurity measures, such as not borrowing breeding boars, were not considered feasible. Relatively simple and cheap biosecurity measures were rejected for reasons of cost, highlighting the participants' general level of poverty and the relevance of poverty as a specific factor governing disease control results. The participatory methodology allowing for discussions, co-creation and the option to refuse measures seemed to facilitate the implementation of measures that had initially been thought to be controversial. The broad community approach was deemed to be positive for strengthening community identity, cooperation and implementation.

Children's digital play as collective family resilience in the face of the pandemic.

In this article we explore how digital play as conducted through various social media and online meeting platforms facilitated resiliency and confidence building in children during the COVID-19 pandemic. Using day-in-the-life methodology and narrative inquiry, we disseminate and examine observations collected on children aged 2-10 during lockdown in a Newfoundland neighbourhood. Children utilized platforms such as TikTok, YouTube, and Zoom to embrace their agentic digital play in ways that repurposed the platforms to fulfil life milestones and social needs otherwise impacted and disrupted by pandemic restrictions. Through a series of vignettes and interviews, our research not only examines how such digital play benefits children and their healthy development, but how parents reacted to and assisted with their children's agentic digital platform manipulation and how this provided positive benefits and enriching experiences to the entire family. We additionally explore the conflicts and tensions both children and parents encountered in securely implementing free play via digital platforms, including fears of excess screen-time, digital dependency, and online threats, all of which risk limiting children's ability to independently explore their creativity and identities through digital play if not handled sensitively. Despite the hurdles to implementing digital play, this study exposes why it is essential for families to navigate this online terrain; this study ultimately poses that digital play and online platforms not only were beneficial to maintaining and building family resilience during the pandemic but will be vital assets in sustaining resiliency and positive mindsets moving forward with pandemic recovery.

The Construction of Doctor-patient Community with a Shared Future Based on Mencius’ Theory of Original Goodness of Human Nature / 中国医学伦理学

Since the first medical reform, China has carried out three reforms and improvements to the medical system. However, there are still some shortcomings, the problems at different levels are mainly reflected in the doctor-patient relationship. Doctor-patient conflict has become one of the hot topics of social focus. Under the development of the country and the joint efforts of all parties, doctor-patient conflict has been alleviated to a certain extent, and the doctor-patient relationship has been developing in a better direction. With the proposal of the concept of "doctor-patient community with a shared future", the joint construction of a community between doctors and patients has become a further goal. Mencius’ theory of original goodness of human nature echoes the construction of the contemporary doctor-patient community with a shared future. It criticizes the empirical theory of human nature and emphasizes the constructive and initiative of goodness in nature, that is, to achieve goodness in nature through preservation and expansion. In the doctor-patient relationship, goodness in nature is the construction of doctor-patient community with a shared future, which requires both doctors and patients to work together with firm confidence and gradually complete the construction of the community by continuous practice.

The co-construction and emotion management of hope within psychosis services.

Introduction: There is a growing acknowledgement of the salience of hope for mental health service-users, in influencing care outcomes and recovery. Understandings of the processes through which hopes are co-constructed, alongside specific conceptualisations of experiences of hoping, remain limited however. Methods: This qualitative study explored how a range of stakeholders experienced and dealt with uncertainty within three purposively selected psychosis services in southern England. In this article we focus particularly on the co-construction of hope within participants' narratives and how this emotion work shaped experiences of hoping. In-depth interviews (n = 23) with service-users, professionals, managers and other stakeholders were analysed following a phenomenological approach. Findings: Hope was spontaneously identified by participants as a fundamental mechanism through which service-users and professionals managed uncertainty when vulnerable. Professionals were influential in shaping users' hopes, both intentionally and unwittingly, while some professionals also referred to managing their own hopes and those of colleagues. Such management of expectations and emotions enabled motivation and coping amidst uncertainty, for users and professionals, but also entailed difficulties where hope was undermined, exaggerated, or involved tensions between desires and expectations. Discussion: Whereas, hope is usually reflected in the caring studies literature as distinctly positive, our findings point to a more ambivalent understanding of hope, as reflected in the accounts of both service-users and professionals where elevated hopes were described as unrealistic and harmful, to the well-being of professionals as well as of service-users. It is concluded that a greater awareness within care contexts of how hopes are co-constructed by professionals and service-users, explicitly and implicitly, can assist in improving health care and healthcare outcomes.

Communication partner strategies in negotiation for meaning in interactions involving aided communication.

Co-constructing meaning is a common feature of all conversations but may have a more specific role in interactions where one of the participants uses aided communication. The present study applies qualitative descriptive analysis supported by quantitative measures in exploring meaning-negotiation strategies of speaking communication partners in task-related aided conversations. The study focuses on identifying and exploring strategies that the communication partners utilise when attempting to interpret the meaning and resolve potential ambiguities of aided utterances in the context of event descriptions. The participants of the study were three aided communicators (age 8 to 11 years), who used graphic communication systems as their main means of communication, and familiar adult communication partners. The results demonstrate that the communication partners employed several strategies in attempting to comprehend, interpret and co-construct the meaning of aided utterances at various phases of interaction. The primary strategy involved clarifying the lexical properties of the aided constructions, reflecting the multidimensional and polysemous nature of graphic communication systems. Structural and referential complexities affected how the elements produced were understood as part of the ongoing context. The study highlights the participants´ shared responsibility in developing and utilising effective meaning-negotiation and repair strategies to support successful communication.

[Experiments to renew the organization of care]. / Expérimenter pour renouveler l'organisation des soins.

While the need to test new ways of organizing our healthcare system has long been recognized, successive initiatives have not always been up to the challenge. Drawing lessons from past experiences, as well as foreign examples, Article 51 of the Social Security Financing Act for 2018 created a new framework for innovative health experiments. Actors in the field now have the opportunity to develop innovative projects while relying on a support and evaluation system for the duration of their trials, according to a logic of co-construction between all stakeholders.

[Innovating in the hospital of tomorrow]. / Innover au sein de l'hôpital de demain.

The hospital of tomorrow must aim not only to be an innovative establishment, but also to become an establishment that innovates. The objective is to bring up initiatives and the expression of needs of the hospital community, to evaluate and prioritize them, and then to implement the selected projects.

Patient engagement in nursing training: An exploratory study / L'engagement des patients dans la formation des étudiants en soins infirmiers : une étude exploratoire

Context: The initial training of healthcare professionals can be used to develop health democracy if patients are sufficiently involved. Objectives: To describe the level of patient engagement in some nurse training institutes and to understand what motivates and hinders this engagement. Method: Exploratory study based on interviews with five patient trainers and eight nurse training institute trainers. The analysis of patient engagement levels was based in part on the Carman scale and the Montreal model. Results: Two trends emerged from this first study: consultation-style patient involvement, and partnershipstyle involvement, where the patient is involved in the pedagogical co-construction of a few teaching units and not of the entire training course. Elements facilitating patient involvement were linked to the participants' motivation, patient support, and patient recruitment methods. Conversely, a lack of institutional motivation, overly demanding recruitment, the absence of remuneration, and inaccessibility could be barriers to patient engagement. Conclusion: Patient engagement in preliminary healthcare training should be considered across the entire curriculum and formalized.

Contexte: La formation initiale des professionnels de santé peut être un levier au développement de la démocratie en santé si l'engagement des patients dans ces formations est suffisant. Objectifs: Décrire le niveau d'engagement des patients dans quelques instituts de formation en soins infirmiers et comprendre ce qui motive et ce qui freine cet engagement. Méthode: Étude exploratoire basée sur des entretiens auprès de cinq patients formateurs et de huit formateurs en IFSI. L'analyse des niveaux d'engagement des patients s'est basée en partie sur l'échelle de Carman et sur le modèle de Montréal. Résultats: Deux tendances ont été dégagées de cette première étude : un engagement patient de type consultation, et un engagement de type partenarial où le patient est impliqué dans la coconstruction pédagogique sur quelques unités d'enseignement et non sur l'ensemble de la formation. Les éléments favorisant l'engagement des patients étaient liés à la motivation des deux protagonistes, l'accompagnement et les modalités de recrutement des patients. À l'inverse, un manque de motivation institutionnelle, un recrutement trop exigeant, l'absence de rémunération et l'inaccessibilité des locaux pouvaient constituer des freins à l'engagement des patients. Conclusion: L'engagement des patients dans la formation initiale en santé doit être réfléchi sur l'ensemble du curriculum et formalisé.

Fantastic perspectives and where to find them: involving patients and citizens in digital health research.

BACKGROUND: Digital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process. Their contribution supports the acceptability of such apps, by providing upstream evidence on incentives and potential barriers that are most relevant to users. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to better integrate public perspectives on these apps. In this paper, we present the co-construction process that led to the survey instrument used in the DIGICIT project and the interpretation of its results. This approach promotes public participation in research on contact tracing and exposure notification apps, as well as related digital health applications. OBJECTIVES: This article has three objectives: (1) describe the methodological process to co-construct a questionnaire and interpret the survey results with patients and citizens, (2) assess their experiences regarding this methodology, and (3) propose best practices for their involvement in digital health research. METHODS: The DIGICIT project was developed in four steps: (1) creation of the advisory committee composed of patients and citizens, (2) co-construction of a questionnaire, (3) interpretation of survey results, and (4) assessment of the experience of committee participants. RESULTS: Of the 25 applications received for participation in the advisory committee, we selected 12 people based on pre-established diversity criteria. Participants initially generated 84 survey questions in the first co-construction meeting, and eventually selected 36 in the final version. Participants made more than 20 recommendations when interpreting survey results and suggested carrying out focus groups with marginalized populations to increase representativity. They appreciated their inclusion early in the research process, being listened to and respected, the collective intelligence, and the method used for integrating their suggestions. They suggested that the study objectives and roles be better defined, that more time in the brainstorming sessions be allowed, and that discussion outside of meetings be encouraged. CONCLUSION: Having patients and citizens actively participating in this research constitutes the main methodological strength. They enriched the study from start to finish, and recommended the addition of focus groups to seek the perspective of marginalized groups that are typically under-represented from digital health research. Clear communication of the project objectives, good organization in meetings, and continuous evaluation from participants allow best practices to be achieved for patients' and citizens' involvement in digital health research. Co-construction in research generates critical study design ideas through collective intelligence. This methodology can be used in various clinical contexts and different healthcare settings.

COVID Alert is a mobile application (app) that was developed created to help limit the spread of COVID-19 in Canada. Although promising, these apps have not been widely used by the population, in part due to limited citizen engagement in their design. The DIGICIT project (DIGITal CITizenship) was carried out in partnership with citizens, including patients, to gather public perspective in Quebec, Canada about the COVID Alert app. The purpose of this article is to describe our method of constructing a survey questionnaire with patients and citizens. We have created an advisory committee of 12 participants. Along with the research team, they created a 36-question survey. They also suggested doing focus groups to add data to the survey by reaching marginalized groups that are traditionally excluded from digital health research. We also wanted to know the experience of the participants being included in this study. We conducted interviews and did a small survey with them. They appreciated being included from the beginning of the research, being listened to, and being respected. They appreciated the creativity of the group and the brainstorming sessions. However, they would have liked the tasks to be clearer from the start. They also would have preferred to have more time in the brainstorming sessions to create the survey questions, and to have discussions outside of the meetings. The inclusion of patients and citizens is the main strength of this project. To improve their integration in health research, there needs to be good communication of project objectives. Also, meetings must be well organized, and participants must be able to evaluate their experience.