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Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. Approach to Patient and Public Involvement (PPI): This paper reports on how PCs shaped the design and development of the PRIME‐UK research programme study materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research programme. The PRIME‐UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross‐sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. Findings: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public Contribution: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient‐facing documents used for studies within the PRIME‐UK research programme. In addition, PCs evaluated their involvement using impact logs and co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]

Background: Involving consumers in systematic reviews can make them more valuable and help achieve goals around transparency. Systematic reviews are technically complex and training can be needed to enable consumers to engage with them fully. The Cochrane Common Mental Disorders group sought to engage people with lived experience of mental health problems in the Voice of Experience College, three workshops introducing them to systematic review methods and to opportunities to contribute as Cochrane consumers. We aimed to collectively evaluate the College from the perspective of both facilitators and consumers, to critically reflect on the experience, and to identify how the College could be sustained and spread to other review groups. Methods: This study was a longitudinal qualitative and collaborative evaluation, structured around normalisation process theory. Both facilitators and consumers were involved in not only providing their perspectives but also reflecting on these together to identify key learning points. Results: The workshops were positively evaluated as being engaging and supportive, largely due to the relational skills of the facilitators, and their willingness to engage in joint or two‐way learning. The College suffered from a lack of clarity over the role of consumers after the College itself, with a need for greater communication to check assumptions and clarify expectations. This was not achieved due to pandemic disruptions, which nevertheless demonstrated that resources for involvement were not prioritised as core business during this period. Conclusions: Soft skills around communication and support are crucial to effective consumer engagement. Sustaining involvement requires sustained communication and opportunities to reflect together on opportunities and challenges. This requires committed resources to ensure involvement activity is prioritised. This is critical as negative experiences later in the involvement journey can undermine originally positive experiences if contributors are unclear as to what their involvement can lead to. Open discussions about this are necessary to avoid conflicting assumptions. The spread of the approach to other review groups could be achieved by flexibly adapting to group‐specific resources and settings, but maintaining a core focus on collaborative relationships as the key mechanism of engagement. Patient and Public Contribution: Public contributors were collaborators throughout the evaluation process and have co‐authored the paper. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes. Methods: We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. Results: From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. Conclusions: Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. Patient and Public Contribution: We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research. [ABSTRACT FROM AUTHOR]

Objective: This article addresses the persistent challenge of Delayed Hospital Discharge (DHD) and aims to provide a comprehensive overview, synthesis, and actionable, sustainable plan based on the synthesis of the systematic review articles spanning the past 24 years. Our research aims to comprehensively examine DHD, identifying its primary causes and emphasizing the significance of effective communication and management in healthcare settings. Methods: We conducted the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐ScR) method for synthesizing findings from 23 review papers published over the last two decades, encompassing over 700 studies. In addition, we employed a practical and comprehensive framework to tackle DHD. Rooted in Linderman's model, our approach focused on continuous process improvement (CPI), which highlights senior management commitment, technical/administrative support, and social/transitional care. Our proposed CPI method comprised several stages: planning, implementation, data analysis, and adaptation, all contributing to continuous improvement in healthcare delivery. This method provided valuable insights and recommendations for addressing DHD challenges. Findings: Our DHD analysis revealed crucial insights across multiple dimensions. Firstly, examining causes and interventions uncovered issues such as limited discharge destinations, signaling unsustainable solutions, and inefficient care coordination. The second aspect explored the patient and caregiver experience, emphasizing challenges linked to staff uncertainty and negative physical environments, with notable attention to the underexplored area of caregiver experience. The third theme explored organizational and individual factors, including cognitive impairment and socioeconomic influences. The findings emphasized the importance of incorporating patients' data, recognizing its complexity and current avoidance. Finally, the role of transitional and social care and financial strategies was scrutinized, emphasizing the need for multicomponent, context‐specific interventions to address DHD effectively. Conclusion: This study addresses gaps in the literature, challenges prevailing solutions, and offers practical pathways for reducing DHD, contributing significantly to healthcare quality and patient outcomes. The synthesis introduces the vital CPI stage, enhancing Linderman's work and providing a pragmatic framework to eradicate delayed discharge. Future efforts will address practitioner consultations to enhance perspectives and further enrich the study. Patient or Public Contribution: Our scoping review synthesizes and analyzes existing systematic review articles and emphasizes offering practical, actionable solutions. While our approach does not directly engage patients, it strategically focuses on extracting insights from the literature to create a CPI framework. This unique aspect is intentionally designed to yield tangible benefits for patients, service users, caregivers, and the public. Our actionable recommendations aim to improve hospital discharge processes for better healthcare outcomes and experiences. This detailed analysis goes beyond theoretical considerations and provides a practical guide to improve healthcare practices and policies. [ABSTRACT FROM AUTHOR]

Introduction: The implementation and evaluation of patient participation to obtain high‐quality transitional care for older people is an international priority. Intermediate care (IC) services are regarded as an important part of the patient's pathway from the specialist to the primary care levels, bridging the gap between the hospital and the home. Patients may experience varying capacities and conditions for patient participation. Yet, few tools for evaluating patients' preferences for patient participation within IC services are at hand. Accordingly, further knowledge is needed to understand and scaffold processes for patient participation in IC. Therefore, the aim of this project was to translate, validate and pilot test the Patient Preferences for Patient Participation (the 4Ps) with patients in IC services in Norway. Methods: This project comprised two phases: (1) a careful translation and cultural adaptation process, followed by a content validity trial among 15 patients and staff in Norwegian IC and (2) a cross‐sectional survey of the instrument with 60 patients admitted to IC. Results: The translation between Swedish and Norwegian required no conceptual or contextual adaptations. The subsequent cross‐sectional study, designed as a dialogue between the patients and staff, revealed that only 50% of the participants received a sufficient level of patient participation based on their preferences, mostly indicating that patients were receiving less‐than‐preferred conditions for engaging in their health and healthcare issues. Conclusion: The 4Ps instrument was deemed suitable for measuring patient participation based on patient preferences in the IC context and was feasible for both healthcare professionals and patients to complete in an interview when arriving at and leaving services. This may support person‐centred communication and collaboration, calling for further research on what facilitates patient participation and the implementation of person‐centred services for patients in IC. Patient or Public Contribution: First, the current paper is part of the IPIC study (i.e., the implementation of patient participation in IC). Influenced by a James Lind Alliance process, the study addresses research uncertainties identified by patients, next of kin, staff and researchers in the cocreation process. Second, cognitive interviewing was conducted with 15 representatives of the target population: seven patients receiving IC services, one home‐dwelling previous IC patient (altogether four women and four men, most of them 80 years or older) and seven healthcare staff working in IC services. The interviews determined the relevance, comprehensiveness and clarity of the 4Ps. Finally, 60 patients admitted to IC took part in the cross‐sectional study. [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: People living with dementia experience communication difficulties. Personal information documents, or healthcare passports, enable communication of information essential for the care of a person with dementia. Despite the potential for providing person‐centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation—Behaviour (COM‐B) model can be used to understand factors determining individuals' behaviours. Objectives: This study aimed to identify the barriers to and facilitators of the use of healthcare passports for people living with dementia through a systematic review methodology. Methods: A systematic search of six electronic databases was undertaken. Grey literature was searched using three databases. All study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high‐income countries were included. Study quality was assessed using the NICE Quality Appraisal Checklist. Thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM‐B framework. Results: Nineteen papers were included. Themes included training, awareness, embedding the process in norms and appreciating the value of the personal information documents. A broad range of barriers and facilitators was identified within each COM‐B domain. Conclusion: This framework provides a starting point for evidence‐informed initiatives to improve the use of personal information documents in the care of people with dementia. Patient and Public Contribution: This is a review of studies and did not involve patients or the public. Review results will guide evaluation of a local personal information document, which will be designed with input from the Dementia Champions Network (includes carers and other stakeholders). [ABSTRACT FROM AUTHOR]

Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well‐planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. Results: Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision‐makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. Conclusion: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID‐19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision‐makers and partners. Patient or Public Contribution: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript. [ABSTRACT FROM AUTHOR]

Background: People with literacy needs can experience many challenges in accessing, understanding and using health services and health information. Such challenges can adversely impact patient‐provider interactions and ultimately, health outcomes. Healthcare providers need to be aware of health literacy (HL) to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes. Methods: This paper reports on a process of patient and public involvement (PPI) with participants in an adult literacy programme acting as PPI contributors to identify priority areas for a local hospital HL action plan and to develop a protocol for a PPI process with other groups. A qualitative community‐based participatory research study design informed by principles of PPI was undertaken, drawing on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co‐creation. Three workshops with six PPI contributors took place to identify issues to be included in the hospital action plan. PPI contributors identified issues and grouped these into priority areas using discussion and ranking procedures. Results: Key areas prioritised for HL action by the PPI contributors were: verbal communication, emphasising the patient's right to understand, and improved understanding of medication use. These were incorporated into the action plan. The workshop format and process were deemed acceptable to the group and input on improvements will be incorporated into further work in this area. Conclusion: PPI acts as a lever in the knowledge translation process. Genuine engagement with service users can meaningfully contribute to relevant and sustainable changes to services as well as foster the empowerment of service users. Patient or Public Contribution: Members of the public with literacy needs actively participated in the co‐creation of a HL action plan for a local hospital and in the development of a protocol for a patient and public process for HL research. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. Objective: To describe how our qualitative study, exploring young peoples' perceptions on the feasibility of using technology to detect mental health deterioration, was co‐produced using principles of co‐production, whilst reflecting on impact, challenges and recommendations. Methods: Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co‐production. Reflections from researchers and young people were collected throughout. Results: Seven young people formed an initial Young People's Advisory Group (YPAG); three became co‐researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision‐making. The resulting co‐produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. Conclusions: To our knowledge, this is the first qualitative mental health study to be co‐produced using the principles of co‐production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co‐produced future research. Although co‐production takes time, it makes significant impact to the research, researchers and co‐researchers. Flexible funding for spontaneous suggestions from co‐researchers and more time for interview training is recommended. [ABSTRACT FROM AUTHOR]

Background: In the management of epidemics, like COVID‐19, trade‐offs have to be made between reducing mortality and morbidity and minimizing socioeconomic and political consequences. Traditionally, epidemic management (EM) has been guided and executed attentively by experts and policymakers. It can, however, still be controversial in the public sphere. In the last decades, public engagement (PE) has been successfully applied in various aspects of healthcare. This leads to the question if PE could be implemented in EM decision‐making. Methods: From June to October 2020, seven deliberative discussion focus groups were executed with 35 Dutch citizens between 19 and 84 years old. Their views on PE in COVID‐19 management were explored. The deliberative approach allows for the education of participants on the topic before the discussion. The benefits, barriers, timing and possible forms of PE in EM were discussed. Results: Almost all participants supported PE in EM, as they thought that integrating their experiences and ideas would benefit the quality of EM, and increase awareness and acceptance of measures. A fitting mode for PE was consultation, as it was deemed important to provide the public with possibilities to share ideas and feedback; however, final authority remained with experts. The publics could particularly provide input about communication campaigns and control measures. PE could be executed after the first acute phase of the epidemic and during evaluations. Conclusions: This paper describes the construction of an empirically informed framework about the values and conditions for PE in EM from the perspective of the public. Participants expressed support to engage certain population groups and considered it valuable for the quality and effectiveness of EM; however, they expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience. Patient or Public Contribution: No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate. [ABSTRACT FROM AUTHOR]

Background: Shared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia. Methods: We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data. Results: Five main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues. Conclusion: This study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study. Patient or Public Contribution: Patients were involved in the study design, recruitment and analysis. [ABSTRACT FROM AUTHOR]

Background: As part of a multifaceted approach to patient and public involvement and engagement (PPIE), alongside traditional methods, a closed Facebook group was established to facilitate PPIE feedback on various aspects of a project that used video‐recording to examine risk communication in NHS Health Checks between June 2017 and July 2019. Objective: To explore the process and impact of conducting PPIE through a closed Facebook group and to identify the associated benefits and challenges. Methods: Supported by reflections and information from project meetings used to document how this engagement informed the project, we describe the creation and maintenance of the Facebook Group and how feedback from the group members was obtained. Facebook data were used to investigate levels and types of engagement in the closed Facebook group. We reflect on the challenges of using this method of engaging the public in health research. Results: A total of 289 people joined the 'Risk Communication of Cardiovascular disease in NHS Health Checks' PPIE closed Facebook group. They provided feedback, which was used to inform aspects of the study, including participant‐facing documents, recruitment, camera position and how the methodology being used (video‐recorded Health Checks and follow‐up interviews) would be received by the public. Discussion: Using a closed Facebook group to facilitate PPIE offered a flexible approach for both researchers and participants, enabled a more inclusive method to PPIE (compared with traditional methods) and allowed rapid feedback. Challenges included maintaining the group, which was more labour intensive than anticipated and managing members' expectations. Suggestions for best practice include clear communication about the purpose of the group, assigning a group co‐ordinator to be the main point of contact for the group, and a research team who can dedicate the time necessary to maintain the group. Conclusion: The use of a closed Facebook group can facilitate effective PPIE. Its flexibility can be beneficial for researchers, patients and public who wish to engage in the research process. Dedicated time for sustained group engagement is important. Patient or Public Contribution: Patient representatives were engaged with the development of the research described in this paper and a patient representative reviewed the manuscript. [ABSTRACT FROM AUTHOR]

Background: Medicines are often suboptimally managed for heart failure patients across the transition from hospital to home, potentially leading to poor patient outcomes. The Improving the Safety and Continuity Of Medicines management at Transitions of care programme included: understanding the problems faced by patients and healthcare professionals; developing and co‐designing the Medicines at Transitions of care Intervention (MaTI); a cluster randomized controlled trial testing the effectiveness of a complex behavioural MaTI aimed at improving medicines management at the interface between hospitals discharge and community care for patients with heart failure; and a process evaluation. The MaTI included a patient‐held My Medicines Toolkit; enhanced communication between the hospital and the patient's community pharmacist and increased engagement of the community pharmacist postdischarge. This paper reports on the patients' experiences of the MaTI and its implementation from the process evaluation. Design: Twenty one‐to‐one semi‐structured patient interviews from six intervention sites were conducted between November 2018 and January 2020. Data were analysed using the Framework method, involving patients as co‐analysts. Interview data were triangulated with routine trial data, the Consolidated Framework for Implementation Research and a logic model. Results: Within the hospital setting patients engaged with the toolkit according to whether staff raised awareness of the My Medicines Toolkit's importance and the time and place of its introduction. Patients' engagement with community pharmacy depended on their awareness of the community pharmacist's role, support sources and perceptions of involvement in medicines management. The toolkit's impact on patients' medicines management at home included reassurance during gaps in care, increased knowledge of medicines, enhanced ability to monitor health and seek support and supporting sharing medicines management between formal and informal care networks. Conclusion: Many patients perceived that the MaTI offered them support in their medicines management when transitioning from hospital into the community. Importantly, it can be incorporated into and built upon patients' lived experiences of heart failure. Key to its successful implementation is the quality of engagement of healthcare professionals in introducing the intervention. Patient or Public Contribution: Patients were involved in the study design, as qualitative data co‐analysts and as co‐authors. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, all women aged 30–60 years are invited to participate in the national cervical cancer screening programme, which is aimed at early detection and treatment of precancerous lesions. One fourth of the Dutch population has a migration background, with Turkish and Moroccan immigrants being the largest immigrant populations. Turkish‐ and Moroccan‐Dutch women show lower screening participation rates and a higher incidence of cervical cancer, compared to native Dutch women. Since current information materials are not tailored to these women's needs, we developed a short culturally sensitive educational video to facilitate informed decision‐making for cervical cancer screening among Turkish‐ and Moroccan‐Dutch women. This article describes the development process of this video and the lessons learned. Methods: Using the Entertainment–Education communication strategy, we collaborated with an interdisciplinary team of Turkish‐ and Moroccan‐Dutch women, researchers, public health experts, and creative media professionals. We developed the video following the different stages of the Media Mapping model: Orientation, Crystallization, Design/Production, Implementation, and Dissemination. Each stage is described in the paper. Results: The video was developed in Moroccan‐Arabic, ‐Berber and Turkish, and emphasized three main themes: (1) more certainty about having cervical (pre)cancer and the possibility to prevent treatment, surgery, or premature death, and because of this, being there for the children, (2) according to the Islam, a woman should take good care of her health, and (3) anxiety, shame, and privacy. Conclusions: A short culturally sensitive educational video, delivered as part of a larger intervention together with the current information brochure, was developed based on theory and grounded in the needs of Turkish‐ and Moroccan‐Dutch women. The value and effectiveness of this intervention to facilitate informed cervical cancer screening decisions are evaluated in a randomised controlled trial. Patient or Public Contribution: We collaborated with Turkish‐ and Moroccan‐Dutch women during the development process of a short culturally sensitive educational video. Turkish‐ and Moroccan‐Dutch women were also invited to watch the raw footage to verify whether the content and presentation matched their needs and requirements. [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]

Introduction: This paper aims to explore the care processes that best exemplify person‐centred care during physical activity (PA) for long‐term care (LTC) residents with dementia from the perspectives of substitute decision‐makers (SDMs) and LTC home staff. Little is known about how person‐centred care is reflected during PA for residents with dementia, or the barriers and benefits to enacting person‐centred care during PA. Methods: Semistructured interviews were used to collect SDMs and LTC home staffs' perspectives on the importance of person‐centred care during PA from two LTC homes in Canada. The McCormack and McCance person‐centredness framework was used to guide thematic content analysis of responses. Results: SDM (n = 26) and staff (n = 21) identified actions categorized under the sympathetic presence or engagement care processes from the person‐centredness framework as most reflecting person‐centred care. Benefits of person‐centred care during PA were categorized into three themes: functional and physical, behavioural and communication and psychosocial improvements. Barriers to person‐centred care during PA identified were lack of time, opportunities for meaningful activity in LTC setting and staff experiences with resident aggression. Significance: Understanding the care processes that are most recognized as person‐centred care and valued by SDMs and LTC home staff has implications for education and training. Insights into SDMs' care expectations regarding person‐centred care can inform staff about which actions should be prioritized to meet care expectations and can foster relationships to the benefit of residents with dementia. Patient and Public Contribution: Study participants were not involved in the development of research questions, research design or outcome measures of this study. [ABSTRACT FROM AUTHOR]

Introduction: This paper explores doctor–patient and companion communication about care decisions in a UK emergency department (ED). Doctors interface between patients and healthcare systems and facilitate access to care across a range of encounters, drawing on information and authority to make and communicate clinical care decisions. Materials and Methods: We explored characteristics of communication through ethnographic observation of 16 video‐recorded case studies of ED consultations (average length: 1 h) collected over 6 months. Companions were present in 10 cases. We conducted a framework analysis to understand the roles of doctors, consultants, patients and companions in relaying ED care decisions. Findings: We present two cases to reflect companion roles and their effect on the consultation. The urgency for care and scarcity of resources means clinicians justify decisions and strategize to move patients along ED pathways. Discussion: Everyday care interactions between patients and doctors are goal‐oriented and companions participate by providing case information, querying decisions and advocating for care. Our findings reflect how doctors justify decisions made in communicating the next steps in ways that characterize the clinical encounter. Conclusion: By exploring everyday interactions our study contributes to a growing understanding of patient–clinician and companion communication in the ED. Patient or Public Contribution: Patients and caregivers voluntarily participated in data collection and consented to video recordings being conducted of ED consultations between them and junior doctors. There was extensive consultation with all grades of staff about the acceptability of the work and the best way to conduct it to minimize the impact on patients and staff. Through this manuscript, we have demonstrated the presence and important role of companions. On reflection it would have been valuable to have included patients and companions in discussions about the work; however, this project was conducted with very limited funding and no resources were committed to patient and public involvement. Given the setting and scope of the study, it was not feasible to involve patients or members of the public in other stages of the research or preparation of the manuscript. We recognize this as a potential limitation of the work. [ABSTRACT FROM AUTHOR]

Background: Communicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients' involvement in formal and informal modes of communication regarding managing medications. Objective: The aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication. Methods: The study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough's Critical Discourse Analysis. Results: Data analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients' medications across transitions of care and encouraged health professionals to seek out older patients' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters. Conclusion: Older patients' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients' key concerns about their medications, which hindered their active involvement in formal and informal communication. Patient or Public Contribution: Older adults, family members and health professionals volunteered to be interviewed and observed. [ABSTRACT FROM AUTHOR]

Background: The scope of this priority‐setting process is communication and collaboration in transitional care for patients with acute stroke. Actively involving persons with stroke and their family caregivers is important both in transitional care and when setting priorities for research. Established priority‐setting methods are time‐consuming and require extensive resources. They are therefore not feasible in small‐scale research. This article describes a pragmatic priority‐setting process to identify a prioritized top 10 list of research needs regarding transitional care for patients with acute stroke. Methods: A pragmatic priority‐setting approach inspired by the James Lind Alliance was developed. It involves establishing a user group, identifying the research needs through an online survey, analysing and checking the research needs against systematic reviews, culminating in an online prioritization of the top 10 list. Results: The process was completed in 7 months. A total of 122 patients, family caregivers, health personnel and caseworkers submitted 484 research needs, and 19 users prioritized the top 10 list. The list includes the categories 'patients and caregivers' needs and health literacy', 'health personnel's common understanding', 'information flow between health personnel and patients and caregivers', 'available interventions and follow‐up of patients and caregivers', 'interaction and collaboration between health personnel and caseworkers across hospital and primary healthcare' and 'disabilities after stroke'. Conclusion: This paper outlines a pragmatic approach to identifying and prioritizing users' research needs that was completed in 7 months. The top 10 list resulting from this priority setting process can guide future research relating to communication and collaboration during the transition from hospital to the community for patients with stroke. Patient and Public Contribution: Members of three stroke organizations participated in the advisory group. They gave feedback on the scope and the process, distributed the surveys and prioritized the top 10 list. Persons with stroke and their caregivers submitted research needs in the survey. [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: Community engagement is seen as key to citizen‐centred and sustainable healthcare systems as involving citizens in the designing, implementation and improvement of services and policies is thought to tailor these more closely to communities' own needs and experiences. Organizations have struggled to reach out to and involve disadvantaged citizens. This paper examines how if, why, and when low‐income citizens wish to be involved. Methods: For this qualitative realist case‐study, 19 interviews (one dyad) were held with (20) low‐income citizens in two Dutch municipalities. Additionally, the results were discussed with a reference panel consisting of professionals and citizens to enrich the results and to ensure the results had face validity. Results: The results showed four different ways in which low‐income citizens wished to be involved: (a) in a practical/volunteer way; (b) as a buddy; (c) as a lay expert; (d) not involved at all. The factors affecting citizens' interest and capacity to participate include citizens' own experiences of the services they access and their personal situations, e.g. their mental or physical health, extent of financial crisis, family situation, home environment. None of the interviewees was currently involved, but all had ideas for improving health(care) services and policies. Citizens' experiences of the services they accessed acted as a motivator for some to be involved as they wanted to ensure others would not have the same struggles, while for others their own needs and an apathetic system remained too high a barrier. To enable involvement, citizens need continued support for their own health(care) and financial situation, better communication and accessibility from services, practical support (e.g., training and bus passes) and recognition for their input (e.g., monetary compensation). Conclusion: The study shows that citizens' experiences of the services they accessed influenced if and how they wanted to be involved with health and care services. Despite the fact that all participants had shared solid ideas for improving services and policies, they were hindered by a bureaucratic, impersonal and inaccessible system. Organizations seem to underestimate the required investments to reach out to low‐income citizens and the support required to ensure their involvement. Patient and Public Involvement (PPI) in Study: Citizens as well as PPI organizations were members of the reference panel who helped formulate the research questions and recruitment strategy. The local reference panel also helped to interpret and refine the initial findings. [ABSTRACT FROM AUTHOR]

Background: Health‐care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health‐care professionals on how to discuss uncertainty. Objective: To generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters. Search strategy: A scoping review was conducted. Four databases were searched following the PRISMA‐ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts. Inclusion criteria: Any (non‐)empirical papers were included describing recommendations for any health‐care provider on how to orally communicate uncertainty to patients. Data extraction: Data on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice. Results: Forty‐seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty. Discussion and conclusions: A variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health‐care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients. Patient or public contribution: Results were presented to stakeholders (physicians) to check and improve their practical applicability. [ABSTRACT FROM AUTHOR]

Background: This paper presents an analysis of 32 narratives written by patients waiting for assessment at a transgender health clinic (THC) in England. Narratives are autobiographical free texts, designed to allow patients to describe in their own words their experiences of their gender identity and/or transition prior to a clinic appointment, as part of the assessment process. Objective: Narratives were analysed to identify actions prospective patients had taken to manage their (usually lengthy) waiting times, so that these 'coping strategies' could be shared with future patients. Design: Corpus linguistic methodology was utilized to identify common patterns across the whole corpus of text‐based data, augmented with more detailed sociolinguistic analysis of individual narratives. Results: There are broad commonalities in the way the transition experience is described across the corpus in terms of presentation of key experiences and feelings. There are specific descriptions of a number of recurring coping strategies, both positive and negative. Conclusion: The empowerment value of writing these narratives may be limited; the existence of recurring key features suggests that patients may feel they have to present their experiences in certain ways to be accepted for treatment. However, dissemination of some positive coping strategies may help future clients of THCs to better cope with waiting times, as well as assisting practitioners in THCs in supporting their patients during this wait. Patient/Public Contribution: The clinic's Service Users' Research Advisory Group contributed to formulating the objective and design of the study. Results were presented at the clinic's annual PPI conference. [ABSTRACT FROM AUTHOR]

Introduction: Poor medical information transfer across healthcare visits and providers poses a potential threat to patient safety. Patient‐held health records (PHRs) may be used to facilitate informational continuity, handover communication and patient self‐management. However, there are conflicting opinions on the effectiveness of PHRs, other than in maternal and child care. Moreover, the experiences of users of PHRs in low‐ and middle‐income countries are critical in policy decisions but have rarely been researched. Aim: This study aimed to explore similarities and differences in the perspectives of patients, carers and healthcare providers (HCPs) on the current PHRs for diabetes and hypertension in Kerala. Methods: A qualitative design was used comprising semistructured interviews with patients with diabetes/hypertension (n = 20), carers (n = 15) and HCPs (n = 17) in Kerala, India. Data were analysed using thematic analysis. Results: Themes generated regarding the experiences with PHRs from each user group were compared and contrasted. The themes that arose were organized under three headings: use of PHRs in everyday practice; the perceived value of PHR and where practice and value conflict. We found that in the use of PHRs in everyday practice, multiple PHRs posed challenges for patients carrying records and for HCPs locating relevant information. Most carers carried all patients' past PHRs, while patients made decisions on which PHR to take along based on the purpose of the healthcare visit. HCPs appreciated having PHRs but documented limited details in them. The perceived value of PHRs by each group for themselves was different. While HCPs placed value on PHRs for enabling better clinical decision‐making, preventing errors and patient safety, patients perceived them as transactional tools for diabetes and hypertension medications; carers highlighted their value during emergencies. Conclusion: Our findings suggest that users find a variety of values for PHRs. However, these perceived values are different for each user group, suggesting minimal functioning of PHRs for informational continuity, handover communication and self‐management. Patient and Public Involvement: Patients and carers were involved during the pilot testing of topic guides, consent and study information sheets. Patients and carers gave their feedback on the materials to ensure clarity and appropriateness within the context. [ABSTRACT FROM AUTHOR]

Background: Health communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e ‐ patients use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums. Objective: Given possible discrepancies between preconceptions about the kind of language that patients can understand and the terms they may actually know and use, the purpose of this paper was to investigate medical terminology used by patients in online patient forums. Design: Using data from online patient–patient communication where patients communicate with each other without expert moderation or intervention, we coded two data samples from two online patient forums dedicated to thyroid issues. Results: Previous definitions of medical terms (dichotomized into technical and semi ‐ technical) proved too rudimentary to encapsulate the types of medical terms the patients used. Therefore, using an inductive approach, we developed an analytical framework consisting of five categories of medical terms: dictionary ‐ defined medical terms, co ‐ text ‐ defined medical terms, medical initialisms, medication brand names and colloquial technical terms. The patients in our data set used many medical terms from all of these categories. Discussion and conclusions: Our findings suggest the value of a situated, condition ‐ specific approach to health literacy that recognizes the vertical kind of knowledge that patients with chronic diseases may have. We make cautious recommendations for clinical practice, arguing for an adaptive approach to medical terminology use with patients. [ABSTRACT FROM AUTHOR]

Background and Aims: Communication is important in determining how patients understand the diagnostic process. Empirical studies involving direct observation of communication within diagnostic processes are relatively limited. This ethnographic study aimed to identify communicative practices facilitating or inhibiting shared understanding between patients and doctors in UK acute secondary care settings. Methods: Data were collected in acute medical sectors of three English hospitals. Researchers observed doctors as they assessed patients; semistructured interviews were undertaken with doctors and patients directly afterwards. Patients were also interviewed 2–4 weeks later. Case studies of individual encounters (consisting of these interviews and observational notes) were created, and were cross‐examined by an interdisciplinary team to identify divergence and convergence between doctors' and patients' narratives. These data were analysed thematically. Results: We conducted 228 h of observation, 24 doctor interviews, 32 patient interviews and 15 patient follow‐up interviews. Doctors varied in their communication. Patient diagnostic understanding was sometimes misaligned with that of their doctors; interviews revealed that they often made incorrect assumptions to make sense of the fragmented information received. Thematic analysis identified communicative practices that seemed to facilitate, or inhibit, shared diagnostic understanding between patient and doctor, revealing three themes: (1) communicating what has been understood from the medical record, (2) sharing the thought process and diagnostic reasoning and (3) closing the loop and discharge communication. Shared understanding was best fostered by clear communication about the diagnostic process, what had already been done and what was achievable in acute settings. Written information presents an underutilised tool in such communication. Conclusions: In UK acute secondary settings, the provision of more information about the diagnostic process often fostered shared understanding between doctor and patient, helping to minimise the confusion and dissatisfaction that can result from misaligned expectations or conclusions about the diagnosis, and the uncertainty therein. Patient/Public Contribution: A patient and public involvement group (of a range of ages and backgrounds) was consulted. They contributed to the design of the protocol, including the timing of interviews, the acceptability of a follow‐up telephone interview, the development of the interview guides and the participant information sheets. [ABSTRACT FROM AUTHOR]

Introduction: There have been some concerns about the impact of temporary doctors, otherwise known as locums, on patient safety and the quality of care. Despite these concerns, research has paid little attention to the implications of locum working on patient experience. Methods: A qualitative semi‐structured interview study was conducted with 130 participants including locums, people working with locums and patients with experience of being seen or treated by locums. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge. Results: Three main themes were constructed through analysis: (1) Awareness and disclosure; patients were not always aware if their doctor was a locum, and there was some debate about whether patients had a right to know, particularly if locum working presented quality and safety risks. (2) Continuity and accessibility of care; access was regarded as priority for acute conditions, but for long‐term or serious conditions, patients preferred to see a permanent doctor who knew their history, although it was acknowledged that locums could provide fresh perspectives. (3) Communication and practice; locums and patients described how consultations were approached differently when doctors worked as locums. Patients evaluated their interactions based on how safe they felt with practitioners. Conclusion: Patients reported that they were unlikely to have continuity of care with any doctors delivering care, regardless of their contractual status. Locums sometimes provided new perspectives on care which could be beneficial for patient outcomes, but for patients with long‐term, complex or serious conditions continuity of care was important, and these patients may avoid or delay seeking care when locums are the only available option. Patient or Public Contribution: Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., study protocol, participant information sheets, survey tools, interview schedules, emerging findings). Our PPI forum co‐produced our patient interview schedule, two members of our PPI forum led the patient focus groups and all were involved in analysis of patient interviews. Our PPI Chair was involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Experience‐Based Co‐Design (EBCD) is a multi‐stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co‐design, in the specific context of early‐phase clinical trials. Methods: We reflect on the opportunities and challenges of applying EBCD in a new context of early‐phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care. Results: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person‐centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early‐phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations. Conclusion: Integrating EBCD into early‐phase oncology trials presents an opportunity to enhance person‐centered care and can lead to simultaneous improvements in care processes and therapeutic development. Patient or Public Contribution: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials. [ABSTRACT FROM AUTHOR]

Introduction: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence‐informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. Methods: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty‐eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. Results: Thirty‐eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. Conclusion: This research developed a previously unavailable set of evidence‐informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. Patient and Public Involvement Statement: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co‐authors. [ABSTRACT FROM AUTHOR]

Background: Co‐production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co‐production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. Objective: To address these challenges, we designed the first large co‐productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co‐productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. Design: Two‐year co‐produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. Setting and participants: NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co‐productive partners with the research team. Results: Co‐productive strategies enabled a smooth passage through four different ethics processes within the 10‐week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. Discussion and conclusion: Although expensive and time consuming, co‐production was effective and added value to research processes and study outcomes. [ABSTRACT FROM AUTHOR]

Objective: The paper characterizes outpatient communication in a major cancer hospital in southern China with regard to the structure, style and focus of doctor–patient communication. Method: Fifty‐one encounters between doctors and patients were recorded in the outpatient department of the cancer hospital and analysed inductively to identify patterns of doctor–patient outpatient communication. Results: Outpatient communication in the cancer hospital is characterized by structuralized conversation, doctor domination of the conversation and a focus on technology during communication. These characteristics suggest an extreme inequality of power between Chinese doctors and patients at the individual level. They are also shaped by the institutional environment of Chinese hospitals. Discussion: Measures should be taken at both the interpersonal and institutional level to improve doctor–patient communication. At the micro‐interpersonal level, public education and professional skills training are needed to improve communication and promote mutual understanding between patients and doctors. At the macro‐institutional level, changes are needed in terms of transforming the structural factors that shape doctor–patient communication. Conclusions: Structuralized conversation, doctor domination of the conversation and a focus on technology during outpatient encounters present challenges to effective doctor–patient communication. These patterns are shaped by the institutional environment of Chinese hospitals and suggest the extreme power imbalance between Chinese doctors and patients. [ABSTRACT FROM AUTHOR]

Background Patient or service user involvement in mental health services ( MHS) is a hallmark of the recovery approach. Objective In this viewpoint article, we review Tambuyzer et al. paper 'Patient involvement in mental health care: One size does not fit all' in order to express our opinion of their work. We also suggest specific actions that may enhance the implementation of patient involvement in MHS. Discussion We make three main points about Tambuyzer et al. model. First, the cultural dimension of patient involvement seems underemphasized in the model. Second, the model might be improved if the increasing role of communications technology in patient involvement is taken into consideration. Third, it is important to acknowledge that the process of patient involvement is not linear, and participation is not a homogeneous experience. Conclusions We suggest that the model be expanded and that further work be carried out on the implementation of patient involvement in MHS. [ABSTRACT FROM AUTHOR]

An introduction to the journal is presented in which the editor discusses the topics tackled within the issue including health literacy in Asians with type 2 diabetes, the plight of people with Guillain-Barre syndrome, and trans-related medical care.

Introduction and Aims: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. Methods and Analysis: This is the initial experience gathering and priority identification stage of an experience‐based co‐design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. Results: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient‐provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). Conclusions: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). Patient or Public Contribution: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co‐designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.). [ABSTRACT FROM AUTHOR]

Introduction: Over a fifth of pregnant women are living with multiple long‐term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long‐term health conditions around the time of pregnancy. Methods: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long‐term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. Results: Fifty‐seven women and 51 healthcare professionals participated. Five themes were identified. Women with long‐term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long‐term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. Conclusion: Pregnant women with long‐term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. Patient or Public Contribution: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. Aims: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. Methods: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. Results: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. Conclusion: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. Patient/Public Contribution: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions. [ABSTRACT FROM AUTHOR]

Introduction: Social needs such as housing, employment, food, income and social isolation are having a significant impact on individuals, families and communities. Individuals are increasingly presenting to health settings with social needs, which are ill‐equipped to address nonmedical needs. Social prescribing is a systematic approach connecting the health, social and community sectors to better address social needs and improve health and wellbeing. Social prescribing interventions are being implemented world‐wide. With variability in health and social care systems internationally, it is important that social prescribing interventions are co‐designed with key stakeholders to ensure they can be implemented and sustained within local systems. Methods: This Australian case study provides a detailed description of the process undertaken to co‐design a social prescribing service model in a regional area. Four co‐design workshops were undertaken, two with health and social care professionals and two with community members. The project followed an iterative process of resourcing, planning, recruiting, sensitising, facilitation, reflection and building for change across the workshops. Results: Through this process, key stakeholders were able to successfully co‐design a social prescribing model of care for the region. Conclusion: By demonstrating the process and materials used in our project, we aim to open the 'black box' of co‐design for social prescribing and provide ideas and resources for others to adapt and utilise. Patient or Public Contribution: The project was designed and undertaken by a steering committee comprising university‐based researchers (authors C. O. and S. B.), local government (author D. A.) and health, social and community services (authors B. G., M. W., J. O. and S. R.). Members of the steering committee participated in project design, participant recruitment, workshop facilitation, data analysis and interpretation. [ABSTRACT FROM AUTHOR]

Introduction: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment‐related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. Methods: A qualitative design was used with semi‐structured interviews (online or in‐person) with participants recruited through audiology services and nonclinical services, such as lip‐reading classes. Forty‐six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. Results: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). Conclusions: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld‐led care, family‐centred care and peer support to build support for those with hearing loss. Patient or Public Contribution: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co‐authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript. [ABSTRACT FROM AUTHOR]

Introduction: People being investigated for cancer face a wealth of complex information. Non‐specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. Methods: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. Results: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. Conclusion: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help‐seeking post‐discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. Patient or Public Contribution: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.‐A. M.) was involved in data analysis and writing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Community health workers represent a critical part of the health outreach and services for migrant and seasonal farmworkers ('farmworkers') in rural areas of the United States. Purpose: We sought to identify adaptations to farmworker patient engagement and health outreach made by community health workers during the first 18 months of the COVID‐19 pandemic. Methods: In this qualitative study, we used semi‐structured interviews with community health workers from August 2020 to February 2022 (n = 21). Two coders used thematic analysis to identify three themes related to the experiences of community health workers in conducting health education and outreach to farmworkers prior to and following the onset of the pandemic. Findings: We found themes related to pre‐pandemic outreach efforts to provide health education resource sharing with farmworkers and pandemic‐related outreach efforts that included adoption of porch drops and distanced delivery of health education, adaptation of modes of health education and communication through technology and the internet, and taking on new roles related to COVID‐19. Finally, we identified changes that reverted after the pandemic or will continue as adaptations. Conclusions: Community health workers created practice‐based innovations in outreach in response to the COVID‐19 pandemic. These innovations included new COVID‐19 related roles and new modes of health education and outreach, including the use of digital resources. The changes developed for emergency use in COVID‐19, particularly related to internet and technology, have likely altered how community health workers conduct outreach in North Carolina going forward. Funders, community health worker training programs, and researchers should take note of these innovations. Patient or Public Contribution: Community health workers who typically come from patient populations and provide critical navigation and connection with the health care system advised on the design and creation of this research project, including serving on an advisory board. Two authors have experience working as community health workers. [ABSTRACT FROM AUTHOR]

Introduction: Healthcare professionals have an important role in advocating for the adoption of a brain‐healthy lifestyle for optimal multiple sclerosis (MS) care. Nonetheless, studies to date have mainly focussed on the consumer perspective. Herein, we aimed to explore the current practices of how healthcare professionals support protective, lifestyle‐related behaviour changes to optimise brain health among people living with MS (plwMS), and their perspectives of professional roles. Methods: Australian healthcare professionals were recruited via study advertisements, purposive and snowball sampling, to participate in an online, semi‐structured and audio‐recorded interview. Clinicians were eligible if they had a minimum of a tertiary Bachelor's degree and 12‐months experience working with plwMS, access to the Internet and sufficient time to participant. An inductive, data‐driven form of reflexive thematic analysis was undertaken before thematic categorisation of the quotes from transcripts. Data analysis was guided by the methods of Braun and Clark and the study's underpinnings drew on the constructs of the Social Cognitive Theory (SCT). Results: Six physicians, 10 MS nurses, 18 allied health professionals, one exercise therapist and one alternative therapist were interviewed. Three primary themes encompassing the perceived role of healthcare professionals in supporting a brain‐healthy lifestyle were identified: (1) the empowering role, (2) collaborative role and (3) communicative role. External factors/forces including time constraints, professional expertise, training and skill set, power dynamics, consumer readiness, health literacy, self‐efficacy and motivation are at play, and affect how/when healthcare professionals may support behaviour change to optimise lifelong brain health for plwMS. Conclusion: Healthcare professionals recognise their critical role in encouraging and supporting the adoption of a brain‐healthy lifestyle to optimise lifelong brain health for plwMS. However, discord is evident when they underestimate the complexity of translating knowledge of lifestyle‐related behaviour change(s) into action. Greater awareness must be made in recognising and addressing the bidirectionality of external factors such as those in the SCT, that may influence how behaviour change occurs. Public Contribution: Healthcare professionals volunteered to be interviewed as part of the data collection phase of this study. [ABSTRACT FROM AUTHOR]

Background: Digital contact tracing (DCT) was a central component of the global response to containing COVID‐19. Research has raised concerns that DCT could exacerbate inequities, yet the experiences of diverse communities at greater risk from COVID‐19 are typically underrepresented. Methods: The present study aimed to understand the perceived barriers to the adoption of the app amongst Māori, Pasifika, and disabled people. Focus groups and interviews were undertaken with Māori, Pasifika, and disability sector stakeholders and community participants. Results: Participants (n = 34) generally expressed willingness to utilise DCT and support its adoption within the communities. Simultaneously, participants revealed how the app could marginalise community members who struggled with the usability and those distrusting of the government's COVID‐19 interventions. Conclusions: The findings highlight how addressing communication inequality can assist in the development of contact‐tracing responses that are both effective and equitable. The study provides insights about the role of information and communication technologies as health resources. Patient or Public Contribution: Consulting with members of the target communities was central throughout the present study, including recommendations for potential participants, participation in interviews and sharing early findings for feedback. This study reports on focus groups and interviews with individuals from Māori and disability sectors. [ABSTRACT FROM AUTHOR]

Introduction: Involving people with lived experience is fundamental to healthcare development and delivery. This is especially true for inflammatory bowel disease (IBD) services, where holistic and personalised models of care are becoming increasingly important. There is, however, a significant lack of representation of underserved and diverse groups in IBD research, and there are significant barriers to healthcare access and utilisation among minority groups in IBD. IBD centres need to be aware of these experiences to address barriers via service changes, improve interactions with local communities and promote meaningful engagement for improved health outcomes. Methods: A pragmatic community‐based approach was taken to engage with leaders and members of underserved groups across 11 workshops representing Roma, Afro‐Caribbean, people of African descent and the wider black, Asian and minority ethnic (BAME) communities, Muslim women, refugee community members, deprived areas of South Yorkshire, LGBTQ+ and deaf populations. Thematic analysis of field notes identified patterns of attention across the community groups and where improvements to services were most frequently suggested. Results: Findings demonstrated several barriers experienced to healthcare access and utilisation, including language accessibility, staff attitudes and awareness, mental health and stigma, continuity of support, and practical factors such as ease of service use and safe spaces. These barriers acted as a lever to co‐producing service changes that are responsive to the health and social care needs of these groups. Conclusions: Engaging with people from a range of communities is imperative for ensuring that service improvements in IBD are accessible and representative of individual needs and values. Patient or Public Contribution: Local community leaders and members of community groups actively participated in the co‐design and development of improvements to the IBD service for a local hospital. Their contributions further informed a pilot process for quality improvement programmes in IBD centres. [ABSTRACT FROM AUTHOR]

Shared decision-making approaches, by recognizing the autonomy and responsibility of both health professionals and patients, aim for an ethical 'middle way' between 'paternalistic' and 'consumerist' models of clinical decision making. Shared decision making has been understood in various ways. In this paper, we distinguish narrow and broader conceptions of shared decision making and explore their relative strengths and weaknesses. In the first part of the paper, we construct a summary characterization of an archetypal narrow conception of shared decision making (a conception that does not coincide with any specific published model but which reflects features of a variety of models). We show the shortcomings of such a conception and highlight the need to broaden out our thinking about shared decision making if the ethical (and instrumental) goals of shared decision making are to be realized. In the second part of the paper, we acknowledge and explore the advantages and disadvantages of operating with broader conceptions of shared decision making by considering the analogies between health professional-patient relationships and familiar examples of 'open-ended' relationships (e.g. friendships). We conclude by arguing that the illustrated 'trade-offs' between narrow conceptions (which may protect patients from inappropriately paternalistic professionals but preclude important forms of professional support) and broad conceptions (which render more forms of professional support legitimate but may require skills or virtues that not all health professionals possess) suggest the need to find ways, in principle and in practice, of taking seriously both patient autonomy and autonomy-supportive professional intervention. [ABSTRACT FROM AUTHOR]

Objective To investigate midwives’ attitudes, values and beliefs on the use of intrapartum fetal monitoring. Design Qualitative, semi-structured interviews Subjects and setting Fifty-eight registered midwives in two hospitals in the North of England. Results In this paper two main themes are discussed, these are: informed choice, and the power of the midwife. Midwives favoured the application of informed choice and shared a unanimous consensus on the definition. However, the idealistic perception of informed choice, which included contemporary notions of empowerment and autonomy for women expressing an informed choice, was not reportedly translated into practice. Midwives had to implement informed choice on intrapartum fetal monitoring within a competing set of health service agendas, i.e. medically driven protocols and a political climate of actively managed childbearing. This resulted in the manipulation of information during the midwives’ interactions with women. This ultimately meant that the women often got the choice the midwives wanted them to have. Conclusions The information that a midwife imparts may consciously or subconsciously affect the woman's uptake and understanding of information. Therefore, the midwife has a powerful role to play in balancing the benefits and risk ratios applicable to fetal heart rate monitoring. However, a deeply ingrained pre-occupation with technological methods of intrapartum fetal monitoring over many years has made it difficult for midwives to offer alternative forms of monitoring. This has placed limits on the facilitation of informed choice and autonomous decision making for women. [ABSTRACT FROM AUTHOR]

Background: Patients are increasingly being asked for feedback about their healthcare and treatment, including safety, despite little evidence to support this trend. This review identifies the strategies used to engage patients in safety during direct care, explores who is engaged and determines the mechanisms that impact effectiveness. Methods: A systematic review was performed of seven databases (CINAHL, Cochrane, Cochrane‐Central, Embase, ISI Web of Science, Medline, PsycINFO) that included research published between 2010 and 2020 focused on patient engagement interventions to increase safety during direct care and reported using PRISMA. All research designs were eligible; two reviewers applied criteria independently to determine eligibility and quality. A narrative review and realist synthesis were conducted. Results: Twenty‐six papers reporting on twenty‐seven patient engagement strategies were included and classified as consultation (9), involvement (7) and partnership (11). The definitions of 'patient engagement' varied, and we found limited details about participant characteristics or interactions between people utilizing strategies. Collaborative strategy development, a user‐friendly design, proactive messaging and agency sponsorship were identified as mechanisms to improve engagement about safety at the point of direct care. Conclusions: Agency sponsorship of collaboration between staff and patients is essential in the development and implementation of strategies to keep patients safe during direct care. Insufficient details about participant characteristics and patient–provider interactions limit recommendations for practice change. More needs to be learned about how patients are engaged in discussions about safety, particularly minority groups unable to engage with standard information. Patient or Public Contribution: Review progress was reported to the CanEngage team, including the consumer steering group, to inform project priorities (PROSPERO CRD42020196453). [ABSTRACT FROM AUTHOR]

Introduction: Effective consumer engagement practices can enhance patient safety. This is important for consumers from ethnic minority backgrounds who are exposed to increased risk of patient safety events. Using the Systems Engineering Initiative for Patient Safety model, this study explored staff experiences of creating opportunities for engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety. Method: A qualitative study was conducted using semistructured interviews with cancer service staff from four cancer services across two states in Australia. Purposive sampling was used to recruit healthcare staff from a diverse range of professions. Data were analysed using the Framework Analysis method. Results: Fifty‐four interviews were conducted with healthcare staff. Analysis of the qualitative interview data identified enablers and associated challenges that contributed to creating a shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. Enablers and challenges are reported in relation to four themes: (1) co‐creating safety through shared understanding of care processes; (2) tools and technologies support planned communication; (3) organisational policy levers exist but lack implementation in direct care and (4) formal tasks incorporate consumer engagement more readily than informal interactions. Conclusion: The availability of infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now require expansion to support and create conditions for effective consumer engagement during informal and everyday care tasks. The use of innovative language support tools and cultural considerations are required at the service and system level to support consumer engagement in all types of care interactions. Public and Patient Involvement: The study was embedded within a larger project that included a consumer investigator and was guided by a consumer advisory group (CAG). These consumer team members have lived experience of cancer and are from diverse ethnic backgrounds. CAG members provided feedback on the draft interview guide and participant information for this study. [ABSTRACT FROM AUTHOR]