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Patient and Public Involvement and Engagement (PPIE) in research is recognised by the National Institute for Health and Care Research as crucial for high quality research with practical benefit for patients and carers. Patient and public contributors can provide both personal knowledge and lived experiences which complement the perspectives of the academic research team. Nevertheless, effective PPIE must be tailored to the nature of the research, such as the size and scope of the research, whether it is researcher-led or independently commissioned, and whether the research aims to design an intervention or evaluate it. For example, commissioned research evaluations have potential limits on how PPIE can feed into the design of the research and the intervention. Such constraints may require re-orientation of PPIE input to other functions, such as supporting wider engagement and dissemination. In this commentary, we use the 'Guidance for Reporting Involvement of Patients and the Public' (GRIPP2) short form to share our own experiences of facilitating PPIE for a large, commissioned research project evaluating the National Health Service Diabetes Prevention Programme; a behavioural intervention for adults in England who are at high risk of developing type 2 diabetes. The programme was already widely implemented in routine practice when the research project and PPIE group were established. This commentary provides us with a unique opportunity to reflect on experiences of being part of a PPIE group in the context of a longer-term evaluation of a national programme, where the scope for involvement in the intervention design was more constrained, compared to PPIE within researcher-led intervention programmes. We reflect on PPIE in the design, analysis and dissemination of the research, including lessons learned for future PPIE work in large-scale commissioned evaluations of national programmes. Important considerations for this type of PPIE work include: ensuring the role of public contributors is clarified from the outset, the complexities of facilitating PPIE over longer project timeframes, and providing adequate support to public contributors and facilitators (including training, resources and flexible timelines) to ensure an inclusive and considerate approach. These findings can inform future PPIE plans for stakeholders involved in commissioned research. Plain English Summary: This commentary uses the 'Guidance for Reporting Involvement of Patients and the Public' checklist to describe the activities and lessons learned from the work of a Patient and Public Involvement and Engagement (PPIE) group working with researchers evaluating the National Health Service (NHS) Diabetes Prevention Programme (a nine-month behavioural support programme offered to adults who are at risk of developing type 2 diabetes). The evaluation aimed to find out if the NHS Diabetes Prevention Programme was meeting its aim of reducing type 2 diabetes whilst offering value for money. The PPIE group was made up of members of the public who were either living with diabetes, at risk of diabetes, or had a family history of diabetes. Their aim was to support the work of the research team to identify research priorities, design the research, clarify the meaning of the research results, and help communicate the results to the wider public. However, given that the programme was an NHS service already being delivered in practice, there were limits to what the PPIE group could do in terms of designing the intervention. Instead, our public contributors were involved in all stages of conducting the research, with greater focus on communication of findings from the research evaluation. This report provides an opportunity to reflect on PPIE in a longer-term evaluation of a national programme and reflect on involvement in dissemination and policy impact. We hope that future evaluation programmes can learn from our experiences and optimise PPIE for similar national evaluations. [ABSTRACT FROM AUTHOR]

Participatory arts are increasingly recognised as a valuable and accessible mechanism for giving a voice to the experiences of individuals' health and healthcare. In recent years, there has been a move towards embedding participatory arts-based models into public engagement processes. Here, we contribute to the existing literature on the use of participatory arts-based approaches and their role in health research and healthcare practise, focusing on two interlinked approaches, the creation of personas and storytelling. We draw on two recent projects which have utilised these approaches to inform subsequent healthcare research and as a professional training tool to improve patient experience in a healthcare setting. We add to emerging literature to outline the benefits of these approaches in supporting research and training in healthcare settings, with a focus towards the co-produced foundations of these approaches. We demonstrate how such approaches can be utilised to capture different forms of voices, experiences and perspectives to help inform healthcare research and training, rooted in the lived experience of individuals who are directly involved in the creative process of developing personas via storytelling. These approaches challenge the listener to "walk in someone else's shoes", using their own homes and lives as a theatrical set in which to envisage someone else's story, involving the listener in the creative process through (re)imagining the stories and experiences of the characters. Greater use of immersive, co-produced participatory art-based approaches should be used in PPIE to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, via a process which is based on co-creation and co-production, reorientates the researcher-participant dynamic to fully centre those involved in the research at the heart of the tools used to guide health and healthcare research. In this way, it may also aid in trust and relationship building between institutions and communities in a way which is focused around positive, creative methods to aid health research and healthcare processes. Such approaches may help to break down barriers between academic institutions, healthcare sites and communities. Plain English summary: This article describes how storytelling and the creation of personas, as two forms of participatory arts-based approaches, may be used to inform health research and healthcare practise, including training of healthcare professionals. We draw on two recent projects which have been created with members of diverse local communities, detailing how creative methods can be used in this way. This model of creating art with communities and people with lived experience of health conditions enables ownership of these processes and encourages participants and users to 'take a walk in someone else's shoes'. We suggest that using such approaches helps to further break down barriers between academic institutions, healthcare sites and communities and may boost trust between different stakeholders. Greater use of immersive, co-created participatory arts-based approaches can be used to inform research and training in healthcare settings as a means of centring those with lived experience through co-production. Involving those with lived experience, particularly from groups who are traditionally excluded from research, helps to shift power dynamics, and, in this way, may aid in trust and relationship building between institutions and communities in a way that encourages empathy generated from creative methods to aid health research and healthcare processes. [ABSTRACT FROM AUTHOR]

Background: The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data. Methods: Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data. Results: PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study. Conclusions: Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement). Plain English summary: The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services. In this study, we worked in partnership with researchers, staff, patient and carer participants, and patient and public involvement and engagement contributors, to co-design new tools for the collection, analysis and presentation of patient experience data. We focused on services for people with musculoskeletal conditions and services for people with severe mental health conditions. Our PPIE group, formed at the start of the study, represented a range of relevant and diverse health experiences from patients and carers of specialist services, and primary care. The aim of this paper is to share our experiences from working in partnership with our PPIE contributors on the co-design work of the study. Illustrations of how the PPIE activities added crucial insights in the shaping of the tools are given alongside the research data from patients, carers and staff participants. We experienced some challenges during the project. We discuss how we managed to work together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement). Our experiences of developing multiple components of PPIE work for this study demonstrates the importance of tailoring PPIE to suit different settings, and to complement people's strengths and capacity. It also shows the value of bringing diverse experiences together enabling a shared approach to co-design. Researchers and PPIE contributors wrote this paper jointly. [ABSTRACT FROM AUTHOR]

Background: In primary care, older patients with multimorbidity (two or more long-term conditions) are especially likely to experience patient safety incidents. Risks to safety in this setting arise as a result of patient, staff and system factors; particularly where these interact or fail to do so. Recent research and policy highlight the important contribution patients can make to improving safety. Older patients with multimorbidity may have the most to gain from increasing their involvement but before interventions can be developed to support them to improve their patient safety, more needs to be known about how this is threatened and how patients respond to perceived threats. We sought to identify and describe threats to patient safety in primary care among older people with multimorbidity, to provide a better understanding of how these are experienced and to inform the development of interventions to reduce risks to patient safety.Methods: Twenty-six older people, aged 65 or over, with multimorbidity were recruited to a longitudinal qualitative study. At baseline, data on their health and healthcare were collected through semi-structured interviews. Data were analysed thematically, using a framework developed from a previous synthesis of qualitative studies of patient safety in primary care.Results: Threats to patient safety were organised into six themes, across three domains of health and care. These encompassed all aspects of the patient journey, from access to everyday management. Across the journey, many issues arose due to poor communication, and uncoordinated care created extra burdens for patients and healthcare staff. Patients' sense of safety and trust in their care providers were especially threatened when they felt their needs were ignored, or when they perceived responses from staff as inappropriate or insensitive.Conclusions: For older patients with multimorbidity, patient safety is intrinsically linked to the challenges people face when managing health conditions, navigating the healthcare system, and negotiating care. We consider the implications of this for the development of interventions to reduce threats to patient safety. Potential patient-centred mechanisms include providing patients with more realistic expectations for primary care, and supporting them to communicate their needs and concerns more effectively. [ABSTRACT FROM AUTHOR]

Background: Understandings of personal recovery have emerged as an alternative framework to traditional ideas of clinical progression, or symptom remission, in clinical practice. Most research in this field has focussed on the experience of individuals suffering with psychotic disorders and little research has been conducted to explore the experience of individuals with a personality disorder diagnosis, despite the high prevalence of such difficulties. The nature of the personality disorder diagnosis, together with high prevalence rates in forensic settings, renders the understanding of recovery in these contexts particularly problematic. The current study seeks to map out pertinent themes relating to the recovery process in personality disorder as described by individuals accessing care in either community or forensic settings. Methods: Individual qualitative interviews were utilised to explore the lived experience of those receiving a personality disorder diagnosis and accessing mental health care in either community or forensic settings. A thematic analysis was conducted to identify shared concepts and understanding between participants. Results: Fourty-one individual participant interviews were conducted across forensic and community settings. Recovery was presented by participants as a developing negotiated understanding of the self, together with looked for change and hope in the future. Four specific themes emerged in relation to this process: 1. Understanding early lived experience as informing sense of self 2. Developing emotional control 3. Diagnosis as linking understanding and hope for change 4. The role of mental health services. Conclusions: Through considering personal recovery in personality disorder as a negotiated understanding between the individual, their social networks and professionals this study illustrates the complexity of working through such a process. Clarity of understanding in this area is essential to avoid developing resistance in the recovery process. Understanding of recovery in a variety of diagnostic categories and social settings is essential if a truly recovery orientated mental health service is to be developed. [ABSTRACT FROM AUTHOR]

Background: To explore the current models of practice in centres delivering specialist care for children with disorders of sex development (DSD), an international survey of 124 clinicians, identified through DSDnet and the I-DSD Registry, was performed in the last quarter of 2014. Results: A total of 78 (63 %) clinicians, in 75 centres, from 38 countries responded to the survey. A formal national network for managing DSD was reported to exist in 12 (32 %) countries. The paediatric specialists routinely involved in the initial evaluation of a newborn included: endocrinologist (99 %), surgeon/urologist (95 %), radiologist (93 %), neonatologist (91 %), clinical geneticist (81 %) and clinical psychologist (69 %). A team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, and nursing was only possible in 31 (41 %) centres. Of the 75 centres, 26 (35 %) kept only a local DSD registry and 40 (53 %) shared their data in a multicentre DSD registry. Attendance in local, national and international DSDrelated educational programs was reported by 69, 78 and 84 % clinicians, respectively. Participation in audits/quality improvement exercises in DSD care was reported by 14 (19 %) centres. In addition to complex biochemistry and molecular genetic investigations, 40 clinicians (51 %) also had access to next generation sequencing. A genetic test was reported to be more preferable than biochemical tests for diagnosing 5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase 3 deficiency by 50 and 55 % clinicians, respectively. Conclusion: DSD centres report a high level of interaction at an international level, have access to specialist staff and are increasingly relying on molecular genetics for routine diagnostics. The quality of care provided by these centres locally requires further exploration. [ABSTRACT FROM AUTHOR]

Background: Despite an increase in mental health innovations designed to increase service user and carer involvement in services, there is evidence that service users and carers are still relatively marginalised. This study aimed to identify key informants operating with knowledge of both policy and practice related to future models of mental health management in order to explore the potential de-implementation of existing care planning and possibilities for the introduction of a training programme designed to implement a new user and carer involved and focussed process of mental health care planning.Methods: 13 semi-structured interviews were carried out with key informants from a range of relevant disciplinary backgrounds and professional roles, who were involved locally and nationally in policy, practice and research. The aim of the interviews was to explore their perspectives on contemporary arrangements for care planning procedures and processes and to identify factors that might promote or inhibit the routine incorporation of user/carer led planning. Findings were compared to data derived from service users, carers and professionals to illuminate added value.Results: Key stakeholders identified elements of the current care planning context that were likely to impact on the implementability of user - focussed care planning. Like other stakeholders, key informants felt that the proposed intervention coalesced with the increasing normalisation of user involvement as appropriate and desirable. Participants added to existing data by illuminating the need for organisational bureaucracy and the legacy of prior mental health policy and historical practice to be considered in implementation. Adequate relationships within the system were considered by all stakeholders to be crucial to successful implementation and key informants discussed how this could be eroded through attempts at practice standardisation and current connectivity and culture within services.Conclusions: The study demonstrated the value of incorporating the perspective of stakeholders not directly involved in service delivery in implementation research designed to inform an intervention at the point of design. Their contribution centred on the identification of factors that appeared not be obvious to those working in the system or emanated from political and policy arenas as well as developing the contextual understanding of themes raised by other stakeholders. [ABSTRACT FROM AUTHOR]

Background: Involving service users in planning their care is at the centre of policy initiatives to improve mental health care quality in England. Whilst users value care planning and want to be more involved in their own care, there is substantial empirical evidence that the majority of users are not fully involved in the care planning process. Our aim is to evaluate the effectiveness and cost-effectiveness of training for mental health professionals in improving user involvement with the care planning processes. Methods/Design: This is a cluster randomised controlled trial of community mental health teams in NHS Trusts in England allocated either to a training intervention to improve user and carer involvement in care planning or control (no training and care planning as usual). We will evaluate the effectiveness of the training intervention using a mixed design, including a 'cluster cohort' sample, a 'cluster cross-sectional' sample and process evaluation. Service users will be recruited from the caseloads of care co-ordinators. The primary outcome will be change in self-reported involvement in care planning as measured by the validated Health Care Climate Questionnaire. Secondary outcomes include involvement in care planning, satisfaction with services, medication side-effects, recovery and hope, mental health symptoms, alliance/engagement, well-being and quality of life. Cost- effectiveness will also be measured. A process evaluation informed by implementation theory will be undertaken to assess the extent to which the training was implemented and to gauge sustainability beyond the time-frame of the trial. Discussion: It is hoped that the trial will generate data to inform mental health care policy and practice on care planning. [ABSTRACT FROM AUTHOR]

Background: Untreated caries in young children can result in a referral for extraction in hospital under general anaesthetic (GA). This study aims to explore the impact of caries during the ensuing wait for GA on children resident in the North West of England. Methods: The study involved 456 respondents referred to six hospitals in the Northwest of England. Over a two-month period each of these children/ families completed a questionnaire and gave permission to access their referral and consultation notes. Results: Children (6.78 years old: 1.50 to 16.42) had on average five teeth extracted (ranging from one to a full clearance, with all teeth removed). Sixty seven per cent of parents reported their child had been in pain, 26% reported schools days being missed and 38% having sleepless nights. The average time from referral to operation was 137 days. Results indicated that children could be in discomfort during their wait, as pain was experienced, on average, 14 days before the operation. Wait time significantly predicated the number of sleepless nights b = .004, t(340) = 2.276, p = .023. Conclusions: It is clear that pain, sleepless nights and missed school are a feature during a wait for dental GA and can be exacerbated by an extended wait. These data support the need for not only effective prevention of caries within primary care to reduce wait times and experience of GA but also effective management of pain and infection during a prolonged wait for treatment. [ABSTRACT FROM AUTHOR]

Background: Patterns of service delivery and the organisation of Dental General Anaesthesia (DGA) have been found to differ across hospitals. This paper reports on qualitative research aimed to understand the impact of such variation by exploring views and experiences of families receiving care in different hospital sites, as well as dentists involved in referral and delivery of care. Method: Qualitative semi-structured interviews were conducted with 26 people comprising parents (n = 15), dentists working in primary care (n = 6) and operating dentists (n = 5) in relation to DGA. Participants were recruited from areas across the North West of England to ensure a variety referral and treatment experiences were captured. Field notes were made during visits to all settings included in the study and explored alongside interview transcripts to elicit key themes. Results: A variety of positive and negative impacts on children and parents throughout the referral process and operation day were apparent. Key themes established were clustered around three key topics: 1. Organisational and professional concerns regarding referrals, delivery of treatment and prevention. 2. The role of hospital environment and routine on the emotional experiences of children. 3. The influence of the wider social context on dental health. Conclusion: These findings suggest the need and perceived value of: tailored services for children (such as play specialists) and improved information, such as clear guidance regarding wait times and what is to be expected on the day of the procedure. These features were viewed to be helpful in alleviating the stress and anxiety often associated with DGA. While some elements will always be restricted in part to the hospital setting in which they occur, there are several aspects where best practice could be shared amongst hospitals and, where issues such as wait times have been acknowledged, alternative pathways can be explored in order to address areas which can impact negatively on children. [ABSTRACT FROM AUTHOR]

Background: Extensive caries in children can result in a referral for tooth extraction under General Anaesthesia (GA). While there are guidelines for the use of GA within paediatric dentistry this process is ultimately dependent upon the decision making of the treating dentist. This decision can be influenced locally by the availability of services and their waiting list. GA services for paediatric extractions (DGA) have developed from different historical positions, including community dental services, maxillofacial services and paediatric led specialist services. Methods: This article explores the differences between DGA services provided by 6 randomly selected hospitals across the North West of England. 456 patients who attended a routine DGA appointment in each hospital over a period of two months from 2012 to 2013 gave consent to allow access to their clinical notes and completed a questionnaire (93% consent rate). Data were entered onto SPSS and appropriate statistical tests undertaken. Results: Differences between hospitals included the clinic structure, patient characteristics and the treatment provided. There was a significant difference in the number of previous child DGAs experienced within the family, ranging from 33% to 59% across hospitals. Hospital 1 attendees differed in a number of ways to other areas but notably in the stability of life time residency with 20% of patients having previously lived in another area and with just 58% of parents stating their child regularly attended the dentist (compared to an average of 9% and 81% respectively across other hospitals). Conclusion: Findings suggest services throughout the region face different obstacles in providing support and treatment for young children referred for DGA. There are, however common practices such as preventative treatment, which could impact on caries experience and subsequent DGA referral, a particular issue given the high DGA repeat rate observed. For many children a DGA may be their first dental experience. It is therefore vital to engage with both child and family at this stage, attempt to initiate a pattern of dental attendance and to ensure this experience does not create an on-going cycle of poor dental behaviour and health. [ABSTRACT FROM AUTHOR]

Background: Internet based social media websites represent a growing space for interpersonal interaction. Research has been conducted in relation to the potential role of social media in the support of individuals with physical health conditions. However, limited research exists exploring such utilisation by individuals with experience of mental health problems. It could be proposed that access to wider support networks and knowledge could be beneficial for all users, although this positive interpretation has been challenged. The present study focusses on a specific discussion as a case study to assess the role of the website www.twitter.com as a medium for interpersonal communication by individuals with experience of mental disorder and possible source of feedback to mental health service providers. Method: An electronic search was performed to identify material contributing to an online conversation entitled #dearmentalhealthprofessionals. Output from the search strategy was combined in such a way that repeated material was eliminated and all individual material anonymised. The remaining textual material was reviewed and combined in a thematic analysis to identify common themes of discussion. Results: 515 unique communications were identified relating to the specified conversation. The majority of the material related to four overarching thematic headings: The impact of diagnosis on personal identity and as a facilitator for accessing care; Balance of power between professional and service user; Therapeutic relationship and developing professional communication; and Support provision through medication, crisis planning, service provision and the wider society. Remaining material was identified as being direct expression of thanks, self-referential in its content relating to the on-going conversation or providing a link to external resources and further discussion. Conclusions: The present study demonstrates the utility of online social media as both a discursive space in which individuals with experience of mental disorder may share information and develop understanding, and a medium of feedback to mental health service providers. Further research is required to establish potential individual benefit from the utilisation of such networks, its suitability as a means of service provision feedback and the potential role for, and user acceptability of, mental health service providers operating within the space. [ABSTRACT FROM AUTHOR]

Background: Whilst there has been no clear consensus on the potential for earlier diagnosis of lung cancer, recent research has suggested that the time between symptom onset and consultation can be long enough to plausibly affect prognosis. In this article, we present findings from a qualitative study involving in-depth interviews with patients who had been diagnosed with lung cancer (n = 11), and people who were at heightened risk of developing the disease (n = 14). Methods: A grounded theory methodology was drawn upon to conduct thematic and narrative based approaches to analysis. Results: The paper focuses on three main themes which emerged from the study: i) fatalism and resignation in pathways to help-seeking and the process of diagnosis; ii) Awareness of smoking risk and response to cessation information and advice. iii) The role of social and other networks on help-seeking. Key findings included: poor awareness among participants of the symptoms of lung cancer; ambivalence about the dangers of smoking; the perception of lung cancer as part of a homogenisation of multiple illnesses; close social networks as a key trigger in help-seeking. Conclusions: We suggest that future smoking cessation and lung cancer awareness campaigns could usefully capitalise on the influence of close social networks, and would benefit from taking a 'softer' approach. [ABSTRACT FROM AUTHOR]

Background: Telehealth (TH) and telecare (TC) interventions are increasingly valued for supporting self-care in ageing populations; however, evaluation studies often report high rates of non-participation that are not well understood. This paper reports from a qualitative study nested within a large randomised controlled trial in the UK: the Whole System Demonstrator (WSD) project. It explores barriers to participation and adoption of TH and TC from the perspective of people who declined to participate or withdrew from the trial. Methods: Qualitative semi-structured interviews were conducted with 22 people who declined to participate in the trial following explanations of the intervention (n = 19), or who withdrew from the intervention arm (n = 3). Participants were recruited from the four trial groups (with diabetes, chronic obstructive pulmonary disease, heart failure, or social care needs); and all came from the three trial areas (Cornwall, Kent, east London). Observations of home visits where the trial and interventions were first explained were also conducted by shadowing 8 members of health and social care staff visiting 23 people at home. Field notes were made of observational visits and explored alongside interview transcripts to elicit key themes. Results: Barriers to adoption of TH and TC associated with non-participation and withdrawal from the trial were identified within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings. Respondents' views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. Finally, participants were reluctant to risk potentially disruptive changes to existing services that were often highly valued. Conclusions: These findings regarding perceptions of potential disruption of interventions to identity and services go beyond more common expectations that concerns about privacy and dislike of technology deter uptake. These insights have implications for health and social care staff indicating that more detailed information and time for discussion could be valuable especially on introduction. It seems especially important for potential recipients to have the opportunity to discuss their expectations and such views might usefully feed back into design and implementation. [ABSTRACT FROM AUTHOR]

Background: To investigate organisational factors influencing the implementation challenges of redesigning services for people with long term conditions in three locations in England, using remote care (telehealth and telecare). Methods: Case-studies of three sites forming the UK Department of Health's Whole Systems Demonstrator (WSD) Programme. Qualitative research techniques were used to obtain data from various sources, including semi-structured interviews, observation of meetings over the course programme and prior to its launch, and document review. Participants were managers and practitioners involved in the implementation of remote care services. Results: The implementation of remote care was nested within a large pragmatic cluster randomised controlled trial (RCT), which formed a core element of the WSD programme. To produce robust benefits evidence, many aspect of the trial design could not be easily adapted to local circumstances. While remote care was successfully rolled-out, wider implementation lessons and levels of organisational learning across the sites were hindered by the requirements of the RCT. Conclusions: The implementation of a complex innovation such as remote care requires it to organically evolve, be responsive and adaptable to the local health and social care system, driven by support from front-line staff and management. This need for evolution was not always aligned with the imperative to gather robust benefits evidence. This tension needs to be resolved if government ambitions for the evidence-based scaling-up of remote care are to be realised. [ABSTRACT FROM AUTHOR]

Background: Patients with long-term conditions are increasingly the focus of quality improvement activities in health services to reduce the impact of these conditions on quality of life and to reduce the burden on care utilisation. There is significant interest in the potential for self-management support to improve health and reduce utilisation in these patient populations, but little consensus concerning the optimal model that would best provide such support. We describe the implementation and evaluation of self-management support through an evidence-based 'whole systems' model involving patient support, training for primary care teams, and service re-organisation, all integrated into routine delivery within primary care. Methods: The evaluation involves a large-scale, multi-site study of the implementation, effectiveness, and cost-effectiveness of this model of self-management support using a cluster randomised controlled trial in patients with three long-term conditions of diabetes, chronic obstructive pulmonary disease (COPD), and irritable bowel syndrome (IBS). The outcome measures include healthcare utilisation and quality of life. We describe the methods of the cluster randomised trial. Discussion: If the 'whole systems' model proves effective and cost-effective, it will provide decision-makers with a model for the delivery of self-management support for populations with long-term conditions that can be implemented widely to maximise 'reach' across the wider patient population. [ABSTRACT FROM AUTHOR]

Background: Increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources in the management of a chronic condition. This forms the basis of a novel approach to understanding, designing, and implementing new forms of self-management support. Methods: Drawing on evidence syntheses about social networks and capital and the role of information in self-management, we build on four conceptual approaches to inform the design of our research on the implementation of self-care support for people with long-term conditions. Our approach takes into consideration the form and content of social networks, notions of chronic illness work, normalisation process theory (NPT), and the whole systems informing self-management engagement (WISE) approach to self-care support. Discussion: The translation and implementation of a self-care agenda in contemporary health and social context needs to acknowledge and incorporate the resources and networks operating in patients' domestic and social environments and everyday lives. The latter compliments the focus on healthcare settings for developing and delivering self-care support by viewing communities and networks, as well as people suffering from long-term conditions, as a key means of support for managing long-term conditions. By focusing on patient work and social-network provision, our aim is to open up a second frontier in implementation research, to translate knowledge into better chronic illness management, and to shift the emphasis towards support that takes place outside formal health services. [ABSTRACT FROM AUTHOR]

Background: Total joint replacement (TJR) of the hip or knee for osteoarthritis is among the most common elective surgical procedures. There is some inequity in provision of TJR. How decisions are made about who will have surgery may contribute to disparities in provision. The model of shared decision-making between patients and clinicians is advocated as an ideal by national bodies and guidelines. However, we do not know what happens within orthopaedic practice and whether this reflects the shared model. Our study examined how decisions are made about TJR in orthopaedic consultations. Methods: The study used a qualitative research design comprising semi-structured interviews and observations. Participants were recruited from three hospital sites and provided their time free of charge. Seven clinicians involved in decision-making about TJR were approached to take part in the study, and six agreed to do so. Seventy-seven patients due to see these clinicians about TJR were approached to take part and 26 agreed to do so. The patients' outpatient appointments ('consultations') were observed and audio-recorded. Subsequent interviews with patients and clinicians examined decisions that were made at the appointments. Data were analysed using thematic analysis. Results: Clinical and lifestyle factors were central components of the decision-making process. In addition, the roles that patients assigned to clinicians were key, as were communication styles. Patients saw clinicians as occupying expert roles and they deferred to clinicians' expertise. There was evidence that patients modified their behaviour within consultations to complement that of clinicians. Clinicians acknowledged the complexity of decision-making and provided descriptions of their own decision-making and communication styles. Patients and clinicians were aware of the use of clinical and lifestyle factors in decision-making and agreed in their description of clinicians' styles. Decisions were usually reached during consultations, but patients and clinicians sometimes said that treatment decisions had been made beforehand. Some patients expressed surprise about the decisions made in their consultations, but this did not necessarily imply dissatisfaction. Conclusions: The way in which roles and communication are played out in decision-making for TJR may affect the opportunity for shared decisions. This may contribute to variation in the provision of TJR. Making the importance of these factors explicit and highlighting the existence of patients' 'surprise' about consultation outcomes could empower patients within the decision-making process and enhance communication in orthopaedic consultations. [ABSTRACT FROM AUTHOR]

Plain English Summary: There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research., Abstract: Background Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies. Methods Over 30 people attended a series of interactive workshops, drop-in sessions and meetings in Greater Manchester. This included people living with dementia and cognitive impairments, carers and people without memory problems. Discussions were tailored to suit different audiences and focused on the feasibility and acceptability of a range of different wearable devices and research designs. We also invited volunteers to borrow a device to test at home, enabling further insights from hands-on interactions with devices. Results Discussions revealed that people were supportive of connected health dementia research in principle, provided they gave informed consent and that devices were discreet, comfortable and easy to use. Moreover, they recommended technical support and regular feedback on study progress to encourage ongoing participation. Conclusion By using a range of discussion-based and practical activities, we found it was feasible to involve people affected by dementia and use their insights to shape the development of a software platform and device pool to support future connected health dementia research. We recommend that researchers planning such studies in future pay adequate attention to designing suitable participant information, technical support and mechanisms of providing study progress updates to support sustained engagement from participants.

Background: It is expected that increased demands on services will result from expanding numbers of older people with long-term conditions and social care needs. There is significant interest in the potential for technology to reduce utilisation of health services in these patient populations, including telecare (the remote, automatic and passive monitoring of changes in an individual's condition or lifestyle) and telehealth (the remote exchange of data between a patient and health care professional). The potential of telehealth and telecare technology to improve care and reduce costs is limited by a lack of rigorous evidence of actual impact., Methods/design: We are conducting a large scale, multi-site study of the implementation, impact and acceptability of these new technologies. A major part of the evaluation is a cluster-randomised controlled trial of telehealth and telecare versus usual care in patients with long-term conditions or social care needs. The trial involves a number of outcomes, including health care utilisation and quality of life. We describe the broad evaluation and the methods of the cluster randomised trial, Discussion: If telehealth and telecare technology proves effective, it will provide additional options for health services worldwide to deliver care for populations with high levels of need., Trial Registration: Current Controlled Trials ISRCTN43002091.

Background: In chronic disease management, patients are increasingly called upon to undertake a new role as lay tutors within self-management training programmes. The internet constitutes an increasingly significant healthcare setting and a key arena for self-management support and communication. This study evaluates how a new quasi-professional health workforce - volunteer tutors - engage, guide and attempt to manage people with long-term conditions in the ways of 'good' self-management within the context of an online self-management course., Methods: A qualitative analysis of postings to the discussion centre of 11 online classes (purposively selected from 27) run as part of the Expert Patients Programme. Facilitators (term for tutors online) and participants posted questions, comments and solutions related to self-management of long-term conditions; these were subjected to a textual and discursive analysis to explore: a) how facilitators, through the internet, engaged participants in issues related to self-management; b) how participants responded to and interacted with facilitators., Results: Emergent themes included: techniques and mechanisms used to engage people with self-management; the process facilitators followed - 'sharing', 'modelling' and 'confirming'; and the emergence of a policing role regarding online disclosure. Whilst exchanging medical advice was discouraged, facilitators often professed to understand and give advice on psychological aspects of behaviour., Conclusion: The study gave an insight into the roles tutors adopt - one being their ability to 'police' subjective management of long-term conditions and another being to attempt to enhance the psychological capabilities of participants.