Search

Background: Achieving universal health coverage (UHC) in the context of limited resources will require prioritising the most vulnerable and ensuring health policies and services are responsive to their needs. One way of addressing this is through the engagement of marginalised voices in the priority setting process. Public engagement approaches that enable group level deliberation as well as individual level preference capturing might be valuable in this regard, but there are limited examples of their practical application, and gaps in understanding their outcomes, especially with rural populations. Objective: To address this gap, we implemented a modified priority setting tool (Choosing All Together—CHAT) that enables individuals and groups to make trade‐offs to demonstrate the type of health services packages that may be acceptable to a rural population. The paper presents the findings from the individual choices as compared to the group choices, as well as the differences among the individual choices using this tool. Methods: Participants worked in groups and as individuals to allocate stickers representing the available budget to different health topics and interventions using the CHAT tool. The allocations were recorded at each stage of the study. We calculated the median and interquartile range across study participants for the topic totals. To examine differences in individual choices, we performed Wilcoxon rank sum tests. Results: The results show that individual interests were mostly aligned with societal ones, and there were no statistically significant differences between the individual and group choices. However, there were some statistically significant differences between individual priorities based on demographic characteristics like age. Discussion: The study demonstrates that giving individuals greater control and agency in designing health services packages can increase their participation in the priority setting process, align individual and community priorities, and potentially enhance the legitimacy and acceptability of priority setting. Methods that enable group level deliberation and individual level priority setting may be necessary to reconcile plurality. The paper also highlights the importance of capturing the details of public engagement processes and transparently reporting on these details to ensure valuable outcomes. Public Contribution: The facilitator of the CHAT groups was a member from the community and underwent training from the research team. The fieldworkers were also from the community and were trained and paid to capture the data. The participants were all members of the rural community‐ the study represents their priorities. [ABSTRACT FROM AUTHOR]

Introduction: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place‐of‐care decisions, or the social organisation of those practices. Methods: As part of a wider study exploring optimal place‐of‐care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27–31 weeks gestation) cared for in a neonatal unit in the last 12 months. Findings: We highlight parents' labour‐intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place‐of‐care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place‐of‐care decision‐making and other efficiency‐focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. Conclusion: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. Patient or Public Contribution: The OPTI‐PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences—as reported in this paper. The OPTI‐PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life‐changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co‐author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under‐reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation. Methods: The scoping review was conducted in accordance with PRISMAScR and included any study published in a peer‐reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed‐method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers. Results: Of the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion. Conclusion: Healthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation. Patient or Public Contribution: One of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper. [ABSTRACT FROM AUTHOR]

Background: We report on a study of a facilitated interactive group learning approach, through Collaborative Implementation Groups (CIGs), established to enhance capacity for equity‐sensitive evaluation of healthcare services to inform local decision‐making: (1) What was the experience of participants of the CIGs? (2) How was knowledge mobilisation achieved? (3) What are the key elements that enhance the process of coproducing equity‐sensitive evaluations? Methods: A thematic analysis of qualitative data obtained from focus group (FG) discussions and semistructured interviews exploring the experiences of participants. All FGs included representation of participants from different projects across the programme. Interviews were conducted with a member from each of the teams participating in the first cohort after their final workshop. Results: We identified four themes to illustrate how the approach to delivering intensive and facilitated training supported equity‐sensitive evaluations of local healthcare services: (1) Creating the setting for coproduction and knowledge mobilisation; (2) establishing a common purpose, meaning and language for reducing health inequalities; (3) making connections and brokering relationships and (4) challenging and transforming the role of evaluation. Conclusion: We report on the implementation of a practical example of engaged scholarship, where teams of healthcare staff were supported with resources, interactive training and methodological advice to evaluate their own services, enabling organisations to assemble timely practical and relevant evidence that could feed directly into local decision‐making. By encouraging mixed teams of practitioners, commissioners, patients, the public and researchers to work together to coproduce their evaluations, the programme also aimed to systematise health equity into service change. The findings of our study illustrate that the approach to delivering training gave participants the tools and confidence to address their organisation's stated aims of reducing health inequalities, coproduce evaluations of their local services and mobilise knowledge from a range of stakeholders. Patient or Public Contribution: The research question was developed collaboratively with researchers, partner organisations and public advisers (PAs). PAs were involved in meetings to agree on the focus of this research and to plan the analysis. N. T. is a PA and coauthor, contributing to the interpretation of findings and drafting of the paper. [ABSTRACT FROM AUTHOR]

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research. Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process. Methods: Trained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). Results: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. Conclusion: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. Patient or Public Contribution: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants. [ABSTRACT FROM AUTHOR]

Context: The involvement of lay people in health care decision‐making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation. Objective: This paper explores the question of how public participation efforts in collective health care decision‐making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts. Results: A conceptual reflection on responsiveness and the characteristics of representative actors in representative‐participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations. Patient or Public Contribution: The paper contributes to improving public participation in health care decision‐making. [ABSTRACT FROM AUTHOR]

Background: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health ‐ care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal. Method: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Findings: Twenty ‐ six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co ‐ governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. Conclusion: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co ‐ governance and dissemination of research processes and findings. [ABSTRACT FROM AUTHOR]

Introduction: The COVID‐19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. Methods: Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID‐19 pandemic. Results: The COVID‐19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID‐19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift. Conclusions: This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID‐19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners. Patient Contribution: Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners. [ABSTRACT FROM AUTHOR]

Background: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. Design: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. Results: The contributors proposed three exemplar roles for patients in patient‐driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). Discussion: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. Patient or Public Contribution: Public contributors were active partners throughout, and co‐authored the paper. [ABSTRACT FROM AUTHOR]

Background: LGBTQ+ individuals have experienced many barriers to receiving quality health care, but the worldwide implementation of person‐centred care should make a positive change. However, as forthright disclosures are difficult to find using traditional methods, novel approaches should be utilized to uncover opinions and experiences on LGBTQ+ health care. Twitter could be a place where people post on this topic. Aim: This study aimed to explore tweets mentioning LGBTQ+ (centred) health care. Methods: The methods consisted of an explorative qualitative content analysis of tweets. The tweets were collected between 26 February and 30 March 2021, resulting in 2524 tweets of which 659 were relevant for content analysis. Results: The results showed an excess of political tweets involving LGBTQ+ health care. Many tweets included general statements on the need for LGBTQ+ health care. The few tweets on personal experiences in LGBTQ+ health care showed the overwhelming need for quality care that has been made difficult by political developments. Conclusion: Most tweets were made to inform others of the necessity of quality health care for LGBTQ+ individuals, but the utilization of person‐centred care is hardly noticeable. Public Contribution: This study was conducted with the involvement of a public partner (second author) who contributed to the design, data analyses and writing of the paper. Moreover, this study involves the analysis of data provided by the public and published on social media. [ABSTRACT FROM AUTHOR]

Background: The Veterans Health Administration (VHA) is building a Whole Health system of care that aspires to empower and equip each Veteran to pursue a personally meaningful vision of health and well‐being. As part of this effort, VHA has developed Taking Charge of My Life and Health (TCMLH), a peer‐led, group‐based programme that seeks to support Veterans in setting and pursuing health and well‐being goals. Prior research showed TCMLH groups to positively impact Veteran outcomes; yet, little is known about Veterans' own experiences and perspectives. Methods: We completed semi‐structured telephone interviews with 15 Veterans across 8 sites who had participated in TCMLH groups offered by the VHA in the virtual format between Summer 2020 and Fall 2021. Inductive thematic analysis was applied to interview transcripts to generate themes. Findings: We identified five themes regarding Veterans' experiences with TCMLH: (1) navigating the virtual format; (2) internalizing the value of health engagement; (3) making healthy lifestyle changes; (4) forging social connections; and (5) taking on a more active role in healthcare. Conclusion: Veterans perceived virtual TCMLH groups as meaningful and beneficial, yet also highlighted several challenges. Their perspectives speak to the need to supplement time‐limited programmes like TCMLH with ongoing, community‐based support. Virtual group‐based well‐being programmes are a promising innovation. Other healthcare systems may draw on VHA's experience while tailoring format and content to the needs of their patient populations. Patient or Public Contribution: Veterans were involved as evaluation participants. A Veteran consultant, who is a coauthor on this paper, was engaged through the conceptualization of the evaluation, development of data collection materials (interview guide) and writing. [ABSTRACT FROM AUTHOR]

Introduction: Paediatric patients with disorders that involve brain functioning are particularly vulnerable with respect to including them in shared decision‐making. Current tools are mostly paper or digital patient information. We lay the groundwork for improving engagement with a concept that we coined 'the Self‐Portrait'. The main goals were to identify (1) obstacles and (2) design parameters that enable patient participation. Methods: A research‐through‐design approach was utilized in nine patients with brain‐related disorders (4–12 years), 15 parents and 15 medical professionals, involving contextual research (interviews and observations) within the paediatric hospital and patients' homes and codesign. Sensitizing materials and early instances of design solutions were deployed as catalysts for communication. Five rounds of enriched interviews and design reviews were thematically analysed to answer the research questions. Results: Obstacles to child involvement were related to children's level of understanding, the time and energy necessary for information processing and lack of perceived relevance of the information. Patients' engagement is supported by design features that extend the time frame of interaction beyond the consultation, transfer information interactively and give control and influence during the consultation. Conclusion: Obstacles were detected that complicate child engagement, which differ between stakeholders. Promising design features were identified that have the potential to play an important role in enabling active child involvement. These findings show that applying principles of human‐centred design research and codesign can bring together patients, parents and medical professionals around a tool that provides a shared language and focus, which are prerequisites to increase child engagement. Patient or Public Contribution: Patients, parents and clinicians contributed as design informants during contextual research and design reviews. Clinicians provided feedback on the initial outcomes of thematic analysis. Two researchers assisted in consensus sessions during the thematic analysis. [ABSTRACT FROM AUTHOR]

Background: Obesity rates are higher among people of lower socioeconomic status. While numerous health behaviour interventions targeting obesity exist, they are more successful at engaging higher socioeconomic status populations, leaving those in less affluent circumstances with poorer outcomes. This highlights a need for more tailored interventions. The aim of this study was to enhance an existing weight loss course for adults living in low socioeconomic communities. Methods: The Behaviour Change Wheel approach was followed to design an add‐on intervention to an existing local authority‐run weight loss group, informed by mixed‐methods research and stakeholder engagement. Results: The COM‐B analysis of qualitative data revealed that changes were required to psychological capability, physical and social opportunity and reflective motivation to enable dietary goal‐setting behaviours. The resulting SMART‐C booklet included 6 weeks of dietary goal setting, with weekly behavioural contract and review. Conclusion: This paper details the development of the theory‐ and evidence‐informed SMART‐C intervention. This is the first report of the Behaviour Change Wheel being used to design an add‐on tool to enhance existing weight loss services. The process benefitted from a further checking stage with stakeholders. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

Introduction: Women experiencing intimate partner violence (IPV) do not tend to go very frequently to formal support services. The objective of this study is to identify barriers related to the accessibility, acceptability, equity, appropriateness and effectiveness of IPV services from the perspective of the professionals working in the IPV public services. Methods: A qualitative study was carried out in the Madrid region based on 13 semi‐structured interviews of young women who had survived IPV as well as 17 interviews with professionals. A thematic content analysis was performed, guided by the dimensions proposed by the World Health Organization (WHO) for friendly services for young people. Results: From the perspective of the young women and professionals, barriers were identified for all the dimensions of the WHO's friendly services for young people: accessibility: lack of information and support from the social setting, scarce dissemination of the services, economic cost, non‐adapted schedules, inadequate locations or lack of services in settings close to young people; acceptability: lack of protocols to guarantee confidentiality, lack of speed in the provision of services or their referral, unwelcoming environments or unsympathetic professional malpractice; equity: discriminatory professional attitudes towards groups with different social status and lack of protocols to ensure the care of these groups; appropriateness: unmet needs and lack of multidisciplinary teams; and effectiveness: shortage of time, resources, competent professionals, protocols and coordination. Conclusions: Strategies are needed to make the necessary changes to promote friendly services for the care of young people exposed to IPV. Additionally, it must be emphasized that resources are needed to raise awareness and disseminate IPV services, as well as to train professionals in this area. Patient or Public Contribution: This paper is based on professionals' perspectives of public IPV‐related services of different areas such as Psychology, Social Work, Nursing, Psychiatry, Social Education and young women exposed to IPV. They either work in the public administration at the local, regional or state level or in NGOs in Spain. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Background: Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods: The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results: Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion: Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China. [ABSTRACT FROM AUTHOR]

Objective: To report on the findings of a systematic review which examined the experiences and views of older people aged 65 years and over on health professionals’ recognition of sexuality and sexual health and whether these aspects of the person are incorporated into care. Review methods: The review followed the methods laid out by the Joanna Briggs Institute. Eleven electronic databases were searched using the terms sexual*, aged, ageing/aging, attitudes and care in any health‐care setting. Only quantitative and qualitative research and opinion papers written in English and offering unique commentary published between January 2004 and January 2015 were eligible. Results: A total of 999 papers were initially identified and of these, 148 were assessed by two reviewers. Eighteen studies – seven quantitative, eight qualitative and three opinion papers – met the inclusion criteria and were appraised. The importance of sexuality to well‐being, language used, expressing sexuality, discomfort discussing sexuality, inadequate sexuality health education and treatment and deficient communication with health‐care professionals were all identified as significant issues in a range of settings. Fourteen categories and five syntheses summarize the 43 findings. Conclusions: Sexuality remains important for many older people; however, embarrassment, dissatisfaction with treatment, negative attitudes and seeming disinterest by health professionals can all inhibit discussions. Professionals and health‐care services need to adopt strategies and demonstrate characteristics which create environments that are more supportive of sexuality. Issues related to sexuality and sexual health should be able to be discussed without anxiety or discomfort so that older people receive optimal care and treatment. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Background: Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective: This study explored participants' experiences of PPI, following attending a 'consensus conference', during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design: Qualitative, semi‐structured interview study. Setting and Participants: Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results: Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) 'We are all in the same boat' and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion: This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement. [ABSTRACT FROM AUTHOR]

Background: Trans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers' experiences of contemporary health‐care services when seeking to transition medically in later life. Objectives: Qualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life. Design: Trans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach. Setting and participants: This paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life. Results: Findings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life. Discussion and conclusions: Messages from this study speak to the importance of improving professionals' knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity. [ABSTRACT FROM AUTHOR]

Background: Opioids are one of the most prescribed treatments for chronic pain (CP). However, their long‐term use (>3 months) has been surrounded by controversy, due to loss of beneficial effects. Objective: To explore the experiences of people with chronic non‐malignant low back pain in Spain undergoing long‐term treatment with opioids. Design: Qualitative study. Setting and participants: We conducted 15 semi‐structured interviews at the Pain Clinic with persons taking opioid treatment. Methods: The interviews were analysed by qualitative content analysis as described by Graneheim and Lundman, and developed categories and themes discussed in light of a biomedicalization framework. Main results: We developed one overarching theme—Living with opioids: dependence and autonomy while seeking relief—and three categories: The long pathway to opioids due to the invisibility of pain; Opioids: from blind date to a long‐term relationship; and What opioids cannot fix. Discussion: The long and difficult road to find effective treatments was a fundamental part of coping with pain, involving long‐term relationships with the health system. This study reflects the benefits, and drawbacks of opioids, along with struggles to maintain autonomy and make decisions while undergoing long‐term treatment with opioids. The paper also highlights the consequences of pain in the economy, family and social life of patients. Conclusions: Patients' experiences should be considered to a greater extent by health‐care professionals when giving information about opioids and setting treatment goals. Greater consideration of the social determinants of health that affect CP experiences might lead to more effective solutions to CP. [ABSTRACT FROM AUTHOR]

Background: Patient ‐ centred care has been advocated as a key component of high ‐ quality patient care, yet its meanings and related actions have been difficult to ascertain. Objective: To map the use of different terms related to the process of giving patients a starring role in their own care and clarify the possible boundaries between terms that are often mixed. Methods: A literature search was conducted using different electronic databases. All records containing the search terms ‘patient engagement’, ‘patient activation’, ‘patient empowerment’, ‘patient involvement’, ‘patient adherence’, ‘patient compliance’ and ‘patient participation’ were collected. Identified literature was then analysed using the Statistical Package for Social Science (SPSS). The number of yearly publications, most productive countries, cross ‐ concepts articles and various scientific fields dealing with the multidisciplinary concepts were identified. Results: Overall, 58 987 papers were analysed. Correspondence analysis revealed three temporal trends. The first period (2002–2004) focused on compliance and adherence, the second period (2006–2009) focused on the relationship between participation and involvement, and the third one (2010–2013) emphasized empowerment. Patient activation and patient engagement followed the temporal development trend connected to the ‘immediate future’. Discussion and conclusions: The bibliometric trend suggests that the role of patient in the health ‐ care system is changing. In the last years, the patient was viewed as a passive receptor of medical prescription. To date, the need to consider patients as active partners of health ‐ care planning and delivery is growing. In particular, the term patient engagement appears promising, not only for its increasing growth of interest in the scholarly debate, but also because it offers a broader and better systemic conceptualization of the patients’ role in the fruition of health care. To build a shared vocabulary of terms and concepts related to the active role of patients in the health ‐ care process may be envisaged as the first operative step towards a concrete innovation of health ‐ care organizations and systems. [ABSTRACT FROM AUTHOR]

Current UK policy has resulted in greater requirements for public and patient participation in health service planning and decision making. Organizations and services need to be able to monitor and evaluate the effectiveness and quality of their community involvement processes, but there are few appropriate evaluation tools or sets of indicators available. This paper reports on work within Bradford Health Action Zone to develop a self-assessment tool for organizations on community involvement.A multi-agency working group developed the tool. A literature search was undertaken and evaluation resources were reviewed. A set of benchmarks for community involvement in regeneration was utilized in developing the assessment areas. A range of individuals with expertise on community involvement practice and performance management was consulted. The tool was then piloted in two primary care trusts prior to final modifications.The process resulted in the production of Well Connected– a self-assessment tool on community involvement designed for organizations to assess their progress and identify areas for improvement. A scoring system assesses evidence of a strategic approach to community involvement, good practice throughout the organization, and a range of opportunities and support. Feedback from the pilots revealed that the tool had facilitated assessment of the strengths and weaknesses of organizational practices.The paper discusses some of the methodological challenges pertaining to the measurement of community involvement. Notwithstanding those challenges, it is argued that Well Connected provides a robust and practical framework that health organizations and their partners can use to assess practice. [ABSTRACT FROM AUTHOR]

Aims and objectives This article considers evidence regarding lay involvement in the NHS, following the White Paper’s commitment to rebuild public confidence in an NHS ‘accountable to patients and open to the public and shaped by their views’. It looks at two aspects of lay involvement: the lay board member’s involvement in primary care group (PCG) decision-making and the engagement of the PCG with the wider public. Methods The paper analyses data from the first sweep of the annual Tracker Survey of a sample of PCGs in England, led by the National Primary Care Research and Development Centre in collaboration with the King’s Fund between September and December 1999. It draws specifically from the postal questionnaires sent to lay members. Firstly, however, it contextualizes this data by reviewing the history of lay involvement before 1997 in the NHS and particularly in primary care. Conclusions The paper concludes that, during the first 6 months of their operation, the lay voice was faintly heard in PCGs. The lay member’s role in decision-making at board-level was peripheral. The majority rated their involvement in key aspects of decision-making as low and their influence on decision-making below that of other board members including the Chief Officer, the chair and the GP board members. Beyond the arena of the board, what little contact there was with the lay voice has taken the shape of informing rather than consulting. Mitigating factors include the early stage at which the survey was completed and the lack of precedents for lay involvement in primary care in a broad sense on which PCGs can draw. [ABSTRACT FROM AUTHOR]

Introduction: Policy discussions reference ideas of informed and active users of e‐health services who gain agency through self‐management, choice and care delivered outside clinical settings. In this article, we aim to problematize this association by "thinking with" material from multiple disciplines to generate higher order insights to inform service development, research and policy. Methods: Drawing on meta‐narrative review methods, we gathered perspectives from multiple disciplines using an iterative process of expert consultation to identify seminal papers citation mapping, synthesis and peer review. Results: We identify six relevant paradigms from sociology, philosophy, health services research, public health, the study of social movements and computer studies. Bringing these paradigms together illuminates the contrasting epistemological and ontological framings that co‐exist in this area, including competing conceptualizations of e‐health technologies as: neutral tools for service delivery, mediators within complex and unpredictable clinical interactions and as agents in their own right. Discussion: There is a need for e‐health policy to recognize many human and non‐human actors, the blurred boundaries between them and the unpredictable and evolving interactions that constitute engagement with e‐health care. Established models for e‐health service development and policy making are not designed for this landscape. There is nothing to be gained by asking whether e‐health, in general, either "increases" or "decreases" agency. Rather specific types and aspects of e‐health have diverse effects and can be simultaneously enabling and disempowering, and be differentially experienced by differently positioned and resourced actors. [ABSTRACT FROM AUTHOR]

Objective: To synthesise the views of patients on patient‐held records (PHR) and to determine from a patient's perspective the effectiveness and any benefits or drawbacks to the PHR. Design: Systematic review and thematic synthesis of qualitative studies, which investigate the perspective of patients on the effectiveness of the PHR. Data sources: Medline, CINAHL, PsychINFO, PubMed, Cochrane. Review methods: Systematic review of literature relevant to the research question and thematic synthesis involving line by line coding of the quotations from participants and the interpretations of the findings offered by authors. Results: Ten papers that reported the experiences of 455 patients were included in the thematic synthesis. Five studies focused on cancer care, two on mental health, one on antenatal care, one on chronic disease and one on learning disability. The completeness of reporting was variable. Three main themes were identified: (i) practical benefits of the PHR (having a record of one's condition, an aide memoire, useful information source and tool for sharing information across the health system); (ii) psychological benefits of the PHR (empowered to ask questions, a place to record thoughts and feelings and feeling in control); and (iii) drawbacks to the PHR (PHR imposes unwanted responsibility and ineffectiveness). Conclusions: The effectiveness of the PHR is largely dependent upon uptake across the health system from patients and health‐care providers alike. Robust qualitative studies are needed, which offer more complete reporting and examine what patients want and need from a PHR. [ABSTRACT FROM AUTHOR]

Background Humour is a complex, dynamic phenomenon that mainly occurs in social situations between two or more people. Most humour research reviews rehearsed as opposed to spontaneous humour and rarely review the patients' perspective. Aim We explore patients' perspectives on the use of humour in health care. We discuss the asymmetrical and divergent humour use between patients and clinical nurse specialists and posit nurses' approaches to risk as a contributing factor. Design A constructivist grounded theory collated researcher-provoked (interviews, observation, field notes, pre-and post-interaction audio diaries) and non-researcher-provoked data (naturally occurring interactions) over 18 months. This paper is based upon four patient focus groups. A constant comparison approach to data collection and analyses was applied using interpretative and illustrative frameworks that balanced what was 'known' and 'unknown' about humour. Setting and participants Patients were recruited from four patient-peer groups. Three audio-taped ( n = 20) and one observed focus group interactions ( n = 12) were undertaken at the groups' regular meeting places. Results Patients hold a broad appreciation of humour and recognize it as being evident in subtle and nuanced forms. Patients wish health-care staff to initiate and reciprocate humour. Conclusion A chasm exists between what patients apparently want with regard to humour use in health-care interactions and what actually transpires. Initiating humour involves risk, and risk-taking requires a degree of self-esteem and confidence. Nurses are, arguably, risk-averse and have low self-esteem. Future research could review confidence and self-esteem markers with observed humour use in nurses and their interactions across a range of specialities. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To synthesize experiences of the patient complaints process for patients and health‐care professionals to identify facilitators and barriers in the successful implementation of patient complaints processes. This will assist the development of cultural change programmes, enabling complaints managers to incorporate stakeholder perspectives into future care. Design: Systematic literature search and meta‐ethnography, comprising reciprocal syntheses of “patient” and “professional” qualitative studies, combined to form a “line‐of‐argument” embodying both perspectives. Data sources: MEDLINE, CINAHL and PsycINFO (database inception to April 2015) were searched to identify international literature in primary and secondary health‐care settings, involving qualitative data collection and analysis. Further studies were identified from hand‐searching relevant journals, contacting authors, article reference lists and Google Scholar. Results: A total of 13 papers, reporting 9 studies from the United Kingdom, Sweden, Australia and New Zealand, were included in the synthesis. Facilitators and barriers to the successful implementation of patient complaints processes were identified across the perspectives of both patients and health‐care professionals. Patients sought to individualize the complaints process by targeting specific professionals who engaged in practices that undermined the identity of patients. In contrast, professionals obscured their own individualism through maintaining a collective identity and withholding personal judgement in relation to patient complaints. Conclusions: Complainants recognized health‐care professionals as bearers of individual accountability for unsatisfactory care, in opposition to the stance of collective responsibility endorsed by professionals. Implementation of patient complaints processes must reconcile the need for individualized resolution, whilst striving to improve the future provision of health care through a collaborative approach between patients and professionals. [ABSTRACT FROM AUTHOR]

Objective To develop and evaluate service user, carer and community involvement in health and social care education. Background Despite the high policy profile of involvement issues, there appear to be no published accounts of schemes that have used a systematic whole-faculty approach to community engagement in health and social care higher education. Focus of this paper The set up and early development of a faculty-wide community engagement project. Setting and participants Staff from the faculty of health in one University, local service users and carers and community group project workers and local National Health Service (NHS) and public sector staff. Design Participatory action research including document review, field notes, questionnaires and interviews. Analysis Thematic analysis. The emerging themes were tested by seeking disconfirming data, and through verification with stake-holders. Results Prior to the study, there were examples of community engagement in the participating faculty, but they occurred in specific departments, and scored low on the ‘ladder of involvement’. Some previous attempts at engagement were perceived to have failed, resulting in resistance from staff and the community. Despite this, an advisory group was successfully formed, and project framing and development evolved with all stake-holders over the subsequent year. The four themes identified in this phase were: building accessibility; being ‘proper’ service users/carers;moving from suspicion to trust: mutually respectful partnerships as a basis for sustainable change; and responses to challenge and emergence. Conclusions Successful and sustainable engagement requires authenticity. Many problems and solutions arising from authentic engagement are emergent, and potentially challenging to organizations. [ABSTRACT FROM AUTHOR]

Objective To explore the roles of Patient Advice and Liaison Services (PALS) in their interactions with service users. Context Every National Health Service health-care provider in England now has a PALS, which provides service users with information and help in resolving concerns and dissatisfactions with health care. Design Longitudinal qualitative study, 2002–4. This paper draws on data from 27 semi-structured interviews. Setting and participants PALS personnel working in six case study PALS in London. Findings PALS personnel adopt seven roles in order to support their clients in sorting out problems with health care: information provider; listener; messenger (passing on information from service users to staff); go-between (passing information forward and back); supporter (helping service users to present their own views); mediator (when two or more parties are in dispute); resource mobilizer (when the support of senior staff or other agencies is necessary to resolve a problem). Conclusions Though these are not new functions, PALS is a universal service which is better placed than front-line health-care staff to offer such support, and increases choice for service users looking for sources of information and advice. [ABSTRACT FROM AUTHOR]

Abstract Objective This paper offers ‘consumer-led’ reflections by steering group members of a patient-centred research study involving consumer advocates, patients’ associations and patients, throughout the whole study, from pre- to post-study phases. Original Study Design The study: ‘Shared decision making and risk communication in general practice’ incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. Setting and participants The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers’ advisory group and a patients’ association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. Discussion Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. ‘Patient involvement’ research initiatives that include an equally wide variety of ‘user’ participants as ‘health-professional’ participants, accountable to a ‘Health in Partnership’ funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change. [ABSTRACT FROM AUTHOR]

Abstract Objective Attempts to synthesize the evidence on the effects of decision aids have been hampered by the lack of consensus regarding how such effectiveness should be measured. This paper seeks to describe and critically assess the range of measures of effectiveness used in randomized controlled trials of decision aids. Search strategy The published systematic reviews of the field were used to identify primary studies evaluating the effects of decision aids. Inclusion criteria Non-randomized trials were excluded from this review. As were abstracts and theses of subsequently published studies, methodological papers and reports of subgroups of a study's main publication. Main results A wide range of measures were used to evaluate the effectiveness of decision aids. The most commonly used measures sought to assess treatment decisions, patient's knowledge and the decision-making process. This pattern was repeated when primary measures of effectiveness were examined. No study attempted to measure the extent to which decisions made were consistent with patient's values. Conclusions Within the current literature there is little consensus on what the aims of decision aids should be. If we can agree that the aim of a decision aid is to help patients make specific personal treatment choices, then evaluations of decision aids should measure the primary effectiveness of their interventions in terms of the extent to which they enable patient's to undergo treatments that agree with their values. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one‐time honorarium, salary) and amount. Further, broad‐based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. Methods: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self‐identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open‐text comments in addition to menu‐based and scaled response options. Basic frequencies were performed for all questions and open‐text comments were analyzed through inductive qualitative content analysis. Results: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open‐text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. Conclusions: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. Patient Contribution: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co‐authors of this manuscript. The survey was co‐designed and pilot tested with patient partners and survey participants were patient partners. [ABSTRACT FROM AUTHOR]

Background: In July 2022, self‐collection became universally available as part of Australia's National Cervical Screening Program. This change aims to address screening inequities experienced among underscreened populations, including women of Indian descent. This study explored experiences of cervical screening, alongside the acceptability of self‐collection, among women of Indian descent living in Victoria, Australia. We also aimed to articulate the informational needs to promote self‐collection among this population. Methods: Five focus group discussions with 39 women living in Victoria were conducted in English (n = 3) and Punjabi (n = 2). Transcripts were thematically analysed, as informed by the Theoretical Framework of Acceptability. Results: Women were motivated by the choice to self‐collect, perceiving the ability to maintain modesty and greater autonomy as key enablers. Healthcare practitioners were seen as central in supporting patient‐centred models of care. Perceived barriers to self‐collection included concerns around its accuracy and women's confidence in collecting their own sample. Widespread dissemination of culturally tailored promotion strategies communicating concepts such as 'privacy' and 'accuracy' were suggested by women to promote self‐collection. Conclusion: Self‐collection was highly acceptable among women of Indian descent, particularly when assured of its accuracy, and sociocultural norms and previous screening experiences are considered. This study highlights the huge potential that self‐collection can play in increasing equity in Australia's cervical screening programme. Patient or Public Contribution: Members of the public were involved in focus group discussions. Findings were summarised and disseminated via a poster. A bicultural worker was involved in all stages of the research. [ABSTRACT FROM AUTHOR]

Background: Global migration has led to a sharp increase in the number of language‐discordant consultations (LDCs) in healthcare. Evidence on how healthcare providers (HCPs) meet migrant patients' needs while mitigating language barriers is lacking. Design: Using purposive and snowball sampling, we recruited twenty‐seven Dutch HCPs (Mage = 45.07, SD = 11.46) and conducted semi‐structured interviews to collect qualitative, open‐ended data for identifying the communication strategies used with migrant patients in LDCs. We analysed the transcripts using deductive and inductive approaches (e.g., constant comparative method from Grounded Theory). Final pattern codes (i.e., key themes) were discussed among the research team until mutual agreement had been achieved. Results: Five key themes emerged from the analyses: HCPs often 'got‐by' with (1) instrumental and (2) affective communication strategies used in language‐concordant consultations to start medical consultations. When some instrumental communication strategies were deemed ineffective (e.g., lingua franca, gesturing, etc.) to bridge language barriers, HCPs turned to (3) incorporating digital tools (e.g., Google Translate). When HCPs were unable to communicate with migrant patients at all, (4) informal, ad‐hoc and professional interpreters were involved. Finally, HCPs often (5) involved additional support to engage migrant patients to engage in treatment‐related behaviours. Discussion and Conclusions: Our results highlight the importance of raising awareness among HCPs about using various combinations of different strategies. The development of a guideline indicating the optimal combination of communication strategies for different medical consultation goals may be useful in reshaping the current communication behaviour of HCPs in LDCs. Patient or Public Contribution: HCPs were the study population involved in this qualitative study. Refugee health advisors, general practitioners and linguistic specialists (i.e., members of the Right2Health consortium) with experience with the Dutch healthcare system were involved throughout the development of this research. This includes a review of the research question, participant information sheet and interview topic guide as well as providing interpretations of the data and feedback to this manuscript. [ABSTRACT FROM AUTHOR]

Background: Compassionate care is a fundamental component of healthcare today; yet, many measures of compassionate care are subjective in focus and lack clarity around what compassionate care looks like in practice. Measures mostly relate to physical healthcare settings, neglecting mental healthcare. They also lack significant involvement of people with lived experience (PLE) of healthcare delivery in their development. This study aimed to begin the process of developing a new patient‐reported measure, one that captures the observable actions of compassionate care delivery or 'compassionate healthcare in action' by any healthcare professional working in any care setting. The study involves PLE of healthcare delivery, both patients and staff, throughout. Methods: A multistage mixed‐methods scale development process was followed. First, items were derived inductively from reflexive thematic analysis of patient and clinician interviews about what compassionate care meant to them (n = 8), with additional items derived deductively from a literature review of existing measures. Next, a panel of patient, clinician and researcher experts in compassionate care was recruited (Round 1: n = 33, Round 2: n = 29), who refined these items in a two‐round modified online Delphi process. Results: Consensus was reached on 21 items of compassionate care in action relating to six facets: understanding, communication, attention, action, emotional sensitivity and connection. These items will form the basis for further scale development. Conclusions: This item development work has laid the foundation of a potential new tool to systematically measure what compassionate healthcare in action looks like to patients. Further research is underway to produce a valid and reliable version of this proposed new measure. We have outlined these initial stages in detail in the hope of encouraging greater transparency and replicability in measure development, as well as emphasising the value of involving PLE throughout the process. Patient or Public Contribution: This study involved PLE of both physical and mental healthcare (as staff, patients and service users) throughout the development of the new measure, including initial project conceptualisation and participation in item generation and refinement stages. [ABSTRACT FROM AUTHOR]

Background: Evidence shows that online interventions could prevent depression. However, to improve the effectiveness of preventive online interventions in individuals with subthreshold depression, it is worthwhile to study factors influencing intervention outcomes. Outcome expectancy has been shown to predict treatment outcomes in psychotherapy for depression. However, little is known about whether this also applies to depression prevention. The aim of this study was to investigate the role of participants' outcome expectancy in an online depression prevention intervention. Methods: A secondary data analysis was conducted using data from two randomised‐controlled trials (N = 304). Multilevel modelling was used to explore the effect of outcome expectancy on depressive symptoms and close‐to‐symptom‐free status postintervention (6–7 weeks) and at follow‐up (3–6 months). In a subsample (n = 102), Cox regression was applied to assess the effect on depression onset within 12 months. Explorative analyses included baseline characteristics as possible moderators. Outcome expectancy did not predict posttreatment outcomes or the onset of depression. Results: Small effects were observed at follow‐up for depressive symptoms (β = −.39, 95% confidence interval [CI]: [−0.75, −0.03], p =.032, padjusted =.130) and close‐to‐symptom‐free status (relative risk = 1.06, 95% CI: [1.01, 1.11], p =.013, padjusted = 0.064), but statistical significance was not maintained when controlling for multiple testing. Moderator analyses indicated that expectancy could be more influential for females and individuals with higher initial symptom severity. Conclusion: More thoroughly designed, predictive studies targeting outcome expectancy are necessary to assess the full impact of the construct for effective depression prevention. Patient or Public Contribution: This secondary analysis did not involve patients, service users, care‐givers, people with lived experience or members of the public. However, the findings incorporate the expectations of participants using the preventive online intervention, and these exploratory findings may inform the future involvement of participants in the design of indicated depression prevention interventions for adults. Clinical Trial Registration: Original studies: DRKS00004709, DRKS00005973; secondary analysis: osf.io/9xj6a. [ABSTRACT FROM AUTHOR]

Background: Persistent somatic symptoms (PSS) frequently remain under‐treated in health care settings. Evidence‐based services that lead affected individuals to early guideline‐based care are currently missing. This study aimed to identify the needs of those affected concerning an internet‐based guide. The second aim was to evaluate public and patient involvement (PPI). Methods: Participants experiencing PSS for at least 6 months were recruited via hospitals, psychotherapeutic practices and self‐help organizations. Qualitative data were gathered via ideation discussions and prioritization tasks. Thematic analysis was conducted to gain insight on the needs of people with lived experiences. PPI was quantitatively evaluated with the Public and Patient Engagement Evaluation Tool. Results: A total of 12 individuals participated (eight females, ages 22–66 years, duration of symptoms 1–43 years). Participants wanted to feel more supported, validated, in control and engaged with managing their health. Content‐related preferences included education, self‐help, social support and contact addresses. The majority of participants (>90%) experienced their involvement as worthwhile. Conclusions: To the best of our knowledge, this is one of the first studies describing PPI in intervention development for PSS. The involvement was perceived as a valuable contribution to the development process. Patient or Public Contribution: Adults with lived experiences were involved at the level of collaboration through the establishment of a participatory research team (PRT) and at the level of consultation through a workshop series, including one of the coauthors. They were involved in developing and validating intervention material and checking data interpretation. [ABSTRACT FROM AUTHOR]

Introduction: Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family‐centred care need information about the characteristics of existing interventions, their development and the domains of family‐centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family‐centred interventions designed to improve experiences with care for children with chronic conditions. Methods: We searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7–20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family‐centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full‐text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family‐centred care. Results: Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed‐methods studies (n = 9 each). The most frequently addressed domains of family‐centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30). Conclusion: This review, which identified 61 unique interventions aimed at improving family‐centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high‐needs population. Patient or Public Contribution: This study was co‐developed with three patient partner co‐investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co‐investigators contributed to this study at all stages, from conceptualization to dissemination. [ABSTRACT FROM AUTHOR]

Background: Health literacy is essential in the promotion of healthy lifestyle habits and chronic disease prevention. Objective: To assess the health literacy level among Hong Kong adolescents; to evaluate the association between access of an online health information platform (GoSmart Channel) and health literacy level; and to examine the association between health literacy level and various unhealthy behaviours. Design: This study recruited students from 10 local secondary schools in Hong Kong to assess the health literacy level among adolescents. Settings and Participants: Participants were required to complete a self‐administered questionnaire on health behaviours and health literacy using the Health Literacy Measure for Adolescents (HELMA). Main Outcome Measure: Data were analysed using descriptive statistics and multivariate regression modelling. Results: A total of 777 responses were collected. Overall, most (74.4%) of the adolescents in Hong Kong have limited health literacy (HELMA score <66). The majority (63.7%) of adolescents relied on their parents for health information, while 11.4% of the respondents sought information from the GoSmart Channel. The intervention of GoSmart Channel was significantly associated with better health literacy in almost all aspects among adolescents. Desired levels of health literacy were significantly associated with better perceived health (adjusted odds ratio: 2.04, p =.001) and negatively associated with a range of unhealthy and risky behaviours including unhealthy dietary habits, poor hygienic measures and physical inactivity. Discussion and Conclusion: This study highlights the importance of improving health literacy among Hong Kong adolescents and the potential of technology‐based interventions. The findings suggest the need for continued efforts to promote health literacy and healthy behaviours among adolescents, especially given the limited health literacy levels observed in the study. Patient or Public Contribution: Members of the GoSmart.Net Built‐on Project patient and public involvement and engagement group advised about survey development. [ABSTRACT FROM AUTHOR]

Background: Poor quality sleep in hospitals may be problematic for patients, negatively impacting their recovery and wellbeing. This project aimed to investigate the effectiveness of codesign in addressing key issues affecting sleep disruption in the healthcare setting. Methods: Codesign with patients, staff and consumer representatives was conducted in an acute metropolitan tertiary public hospital in Sydney, Australia. Through a four‐stage process, a multimodal intervention to address and reduce the impact of sleep disruptions among hospital inpatients was created. Pre‐ and post‐intervention evaluation was used to determine changes in patient‐reported sleep disruption. Results: 'The HUSH Project' (Help Us Support Healing) intervention resulted from the codesign process, which included the provision of HUSH Sleep Packs (with earplugs, eye masks and herbal tea), patient information resources, and ward‐based Sleep Champions. Survey data from 210 patients revealed a statistically significant decrease in patient‐reported noise disturbances for patients in shared rooms following the 4‐week intervention period of the HUSH program. Conclusion: The HUSH Project demonstrated that a novel multimodal intervention may be valuable in reducing sleep disruption in hospitals. These findings also indicate the benefits of using codesign methodology to support improvement projects that seek to enhance patient experiences of care. Patient or Public Contribution: This project utilised codesign methodology, which involved significant contributions from patients and consumer representatives, from research conceptualisation into intervention design, implementation and project evaluation. [ABSTRACT FROM AUTHOR]

Background: Sjögren's ('SHOW‐grins') is a chronic debilitating autoimmune disease characterised by dry eyes and dry mouth, secondary to reduced exocrine function of both the lacrimal and salivary glands. The persistent, severe and serious systemic complications of Sjögren's are poorly understood and often unappreciated, resulting in significant morbidity and treatment burden. This study aimed to explore the experiences of those living with Sjögren's, specifically access to healthcare and attitude towards telemedicine. Additionally, we sought to collect information regarding the impact of the pandemic on their quality of life (QoL). Methods: One hundred and ninety‐four individuals attended an Irish Sjögren's Webinar. Attendees were invited to participate in two online surveys after the webinar. The first survey gathered information related to demographics, disease and experiences during the COVID‐19 pandemic. A combination of bespoke items and validated questionnaires (EULAR Sjögren's Syndrome Patient Reported Index [ESSPRI], COVID‐19 Impact on Quality of Life [COV19‐QoL]) was used. The second survey consisted of a shortened Telehealth Usability Questionnaire. Both were prepared in collaboration with a patient advocate. Results: Survey 1: n = 76; response rate = 39.2%. Thirty‐one respondents (41.4%) to survey 1 reported a delay of ≥5 years between the onset of symptoms and diagnosis. Dry mouth was the most common symptom experienced (76.8%, n = 63), followed by dry eye (74.4%, n = 61), fatigue (57.3%, n = 47) and joint pain (53.7%, n = 44), but a range of other symptoms were also reported. COV19‐QoL results indicated that the pandemic had a detrimental effect on participants' overall QoL (4.0 ± 1.0) and physical health (4.0 ± 0.8) in particular. COV19‐QoL and ESSPRI scores were moderately correlated (0.36, p =.002). Over 70% of respondents had a medical appointment cancelled, delayed or rescheduled (n = 60). Survey 2: n = 57; response rate = 29.4%. Those that had interacted with telemedicine reported largely positive experiences with the virtual model. Conclusion: Clinicians should be aware of the range of symptoms experienced by patients with Sjögren's beyond those of sicca (dry eye and dry mouth) and fatigue. COVID‐19 has negatively influenced the self‐reported health and well‐being of those with Sjögren's, particularly those with higher symptom scores. It is vital that optimised telemedicine models are implemented to ensure continuity in the provision of healthcare for those with chronic illness such as Sjögren's and in preparation for possible future pandemics. Patient or Public Contribution: A group of people living with Sjögren's co‐designed the structure and content of the webinar where the survey was shared. A public and patient involvement (PPI) contributor also collaborated in the selection of questionnaires used in the study, ensuring that the questions asked would best reflect the priorities of patients. They contributed to the writing of this manuscript as co‐authors. Additionally, the research team and Sjögren's patients who contributed to this work have gone on to establish Sjögren's Research Ireland, a collaboration between patient advocates, researchers and PPI facilitators. [ABSTRACT FROM AUTHOR]

Background: Health systems in many countries see person‐centred care as a critical component of high‐quality care but many struggle to operationalize it in practice. We argue that models such as adaptive leadership can be a critical lever to support person‐centred care, particularly for people who have multiple complex care needs. Objective: To reflect on two concepts: person‐centred care and adaptive leadership and share how adaptive leadership can advance person‐centred care at the front‐line care delivery level and the organizational level. Findings: The defining feature of adaptive leadership is the separation of technical solutions (ie applying existing knowledge and techniques to problems) from adaptive solutions (ie requiring shifts in how people work together, not just what they do). Addressing adaptive challenges requires identifying key assumptions that may limit motivations for change and the behaviours influenced by these assumptions. Thus, effective care for patients, particularly those with multiple complex care needs, often entails helping care providers and patients to examine their relationships and behaviours not just identifying technical solutions. Addressing adaptive challenges also requires a supportive and enabling organizational context. We provide illustrative examples of how adaptive leadership principles can be applied at both the front line of care and the organization level in advancing person‐centred care delivery. Conclusions: Advancing person‐centred care at both the clinical and organizational levels requires a growth mindset, a willingness to try (and fail) and try again, comfort in being uncomfortable and a commitment to figure things out, in partnership, in iterative ways. Patients, caregivers, care providers and organizational leaders all need to be adaptive leaders in this endeavour. [ABSTRACT FROM AUTHOR]

Background: The use of Multi‐Criteria Decision Analysis (MCDA) in health care has become common. However, the literature lacks systematic review trend analysis on the application of MCDA in health care. Aim: To systematically identify applications of MCDA to the areas of health care, and to report on publication trends. Methods: English language studies published from January 1, 1980 until October 1, 2013 were included. Electronic databases searches were supplemented by searching conference proceedings and relevant journals. Studies considered for inclusion were those using MCDA techniques within the areas of health care, and involving the participation of decision makers. A bibliometric analysis was undertaken to present the publication trends. Results: A total of 66 citations met the inclusion criteria. An increase in publication trend occurred in the years 1990, 1997, 1999, 2005, 2008, and 2012. For the remaining years, the publication trend was either steady or declining. The trend shows that the number of publications reached its highest peak in 2012 (n = 9). Medical Decision Making was the dominant with the highest number published papers (n = 7). The majority of the studies were conducted in the US (n = 29). Medical Decision Making journal published the highest number of articles (n = 7). Analytic Hierarchy Process (n = 33) was the most used MCDA technique. Cancer was the most researched disease topic (n = 12). The most covered area of application was diagnosis and treatment (n = 26). Conclusion: The review shows that MCDA has been applied to a broad range of areas in the health care, with the use of a variety of methodological approaches. Further research is needed to develop practice guidelines for the appropriate application and reporting of MCDA methods. [ABSTRACT FROM AUTHOR]