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Background: Involving patients is a key premise of national and international policies on patient safety, which requires understanding how patients or carers want to be involved and developing resources to support this. This paper examines patients' and carers' views of being involved in patient safety in primary care and their views of potentially using a co‐designed patient safety guide for primary care (PSG‐PC) to foster both involvement and their safety. Methods: A qualitative study using semistructured face‐to‐face interviews with 18 patients and/or carers in primary care. Interviews were transcribed and analysis was conducted using an inductive thematic approach. Results: Overall participants expressed enthusiasm for the PSG‐PC as a tool to support patients and carers to be involved in patient safety in primary care. However, for some participants being involved in patient safety was seen as taking on the role of General Practitioner and had the potential to add an additional workload for patients. Participants' willingness or ability to be involved in patient safety was influenced by a range of factors including an invisible, often underacknowledged role of everyday safety for patients' interactions with primary care; the levels of involvement that patients wanted in their care and safety and the work of embedding the PSG‐PC for patients into their routine interactions with primary care. Participants identified components of the PSG‐PC that would be useful to them, in particular, if they had a responsibility for caring for a family member if they had more complex care or long‐term conditions. Conclusion: Involving patients and carers in patient safety needs a tailored and personalized approach that enables patients and carers to use resources like the PSG‐PC routinely and helps challenge assumptions about their willingness and ability to be involved in patient safety. Doing so would raise awareness of opportunities to be involved in safety in line with personal preference. Patient or Public Contribution: Patient and public involvement were central to the research study. This included working in partnership to develop the PSG‐PC with patients and carers and throughout our study including in the design of the study, recruiting participants, interpretation of findings. [ABSTRACT FROM AUTHOR]

Background: Patients and carers should be actively involved in patient safety and empowered to use person‐centred approaches where they are asked to both identify safety concerns and partner in preventing them. Objectives: The aim of this study was to co‐design a patient safety guide for primary care (PSG‐PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer. The objectives were to i) identify when and how patients and carers can be involved in primary care patient safety, and ii) identify the relevant information to include in the PSG‐PC. Design: An experience‐based co‐design approach. Setting and Participants: We conducted three workshops with patients, carers, community pharmacists and general practitioners to develop and refine the PSG‐PC. Results: Participants identified both explicit and implicit issues of primary care patient safety especially relating to technical and relational components of involving patients and carers. The importance of communication, understanding roles and responsibilities, and developing partnerships between patients and health‐care providers were considered essential for actively involving patients in patient safety. Co‐developing the PSG‐PC provided insight to improve care to develop the PSG‐PC. Discussion: The PSG‐PC is the first guide to be developed for primary care, co‐designed with patients, carers, general practitioners and pharmacists. The PSG‐PC will support patients and carers to partner with health‐care professionals to improve patient safety addressing international and national priorities to continuously improve patient safety. [ABSTRACT FROM AUTHOR]

Background: Whilst there has been a focus on the importance of social support for managing long‐term conditions, there has been little specific focus on the characteristics of social networks that shape self‐management. Policy emphasis is placed on individual responsibility for self‐care, and this influences commissioning of health‐care services. Assumptions are often made by policymakers about accessibility and preference for support and the influence of the social context on chronic illness management. Objective: To examine the social networks of individuals with long‐term conditions and identify how the characteristics of their composition influences support needs. Design, setting and participants: Thirty participants completed initial face‐to‐face in‐depth interviews, telephone follow‐ups and final face‐to‐face interviews in the north‐west of England. A longitudinal qualitative design was used to elicit the subtle changes in relationships over a year. Findings: The findings suggest that the relationships which constitute a social network influence perceived support needs and attitudes to self‐management. The amalgamation of relationships was characterized into three network typologies (family focused, friend focused or health‐care professional focused) according to which types of relationships were dominant. In the absence of support, accounts highlighted a small number of substitutes who could provide support at times of critical need. Discussion: This study challenges the notion of ‘self’‐management as an individual construct as many of the practices of illness management involved the support and/or negotiation of roles with others. By examining the nuances of relationships, this study has highlighted the tacit boundaries of practical and emotional support provision. [ABSTRACT FROM AUTHOR]

Background: Public resources to answer pertinent research questions about the impact of illness and treatment on people with mental health problems are limited. To target funds effectively and efficiently and maximize the health benefits to populations, prioritizing research areas is needed. Research agendas are generally driven by researcher and funder priorities, however, there is growing recognition of the need to include user‐defined research priorities to make research more relevant, needs‐based and efficient. Objective: To gain consensus on top priorities for research into early intervention in psychosis through a robust, democratic process for prioritization enlisting the views of key stakeholders including users, carers and healthcare professionals. We also sought to determine which user‐prioritized questions were supported by scientific evidence. Design and Methods: We used a modified nominal group technique to gain consensus on unanswered questions that were obtained by survey and ranked at successive stages by a steering group comprising users, carer representatives and clinicians from relevant disciplines and stakeholder bodies. We checked each question posed in the survey was unanswered in research by reviewing evidence in five databases (Medline, Cinahl, PsychInfo, EMBASE and Cochrane Database). Results: Two hundred and eighty‐three questions were submitted by 207 people. After checking for relevance, reframing and examining for duplicates, 258 questions remained. We gained consensus on 10 priority questions; these largely represented themes around access and engagement, information needs before and after treatment acceptance, and the influence of service‐user (SU) priorities and beliefs on treatment choices and effectiveness. A recovery SUtheme identified specific self‐management questions and more globally, a need to fully identify factors that impact recovery. Discussion and Conclusions: Published research findings indicated that the priorities of service users, carers and healthcare professionals were aligned with researchers' and funders' priorities in some areas and misaligned in others providing vital opportunities to develop research agendas that more closely reflect users' needs. Patient and Public Contribution: Initial results were presented at stakeholder workshops which included service‐users, carers, health professionals and researchers during a consensus workshop to prioritize research questions and allow the opportunity for feedback. Patient and public representatives formed part of the steering group and were consulted regularly during the research process. [ABSTRACT FROM AUTHOR]

Background Patient and public involvement ( PPI) in research is growing internationally, but little is known about black and minority ethnic ( BME) involvement and the factors influencing their involvement in health and social care research. Objectives To characterize and critique the empirical literature on BME- PPI involvement in health and social care research. Search strategy Systematic searches of six electronic bibliographic databases were undertaken, utilizing both Me SH and free-text terms to identify international empirical literature published between 1990 and 2016. Inclusion criteria All study designs that report primary data that involved BME groups in health or social care research. Screening was conducted by two reviewers. Data extraction and synthesis Data extraction and quality appraisal were performed independently. Data extraction focused on the level(s) of PPI involvement and where PPI activity occurred in the research cycle. Studies were quality-assessed using the guidelines for measuring the quality and impact of user involvement in research. Data were analysed using a narrative approach. Main results Forty-five studies were included with the majority undertaken in the USA focusing on African Americans and indigenous populations. Involvement most commonly occurred during the research design phase and least in data analysis and interpretation. Conclusion This is the first systematic review investigating BME involvement in health and social care research internationally. While there is a widespread support for BME involvement, this is limited to particular phases of the research and particular ethnic subgroups. There is a need to understand factors that influence BME involvement in all parts of the research cycle. [ABSTRACT FROM AUTHOR]

Objective To combine insights from service users with long-term conditions ( LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health-relevant resources. Background Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self-care support. Method A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long-term condition management ( LTCM) to develop a community referral tool. Results Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self-care. This helped to inform a tool ( PLANS) to tailor access to types of community-based resources which can support LTCM. Conclusions Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention ( PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices. [ABSTRACT FROM AUTHOR]

Objective To combine insights from service users with long-term conditions ( LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health-relevant resources. Background Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self-care support. Method A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long-term condition management ( LTCM) to develop a community referral tool. Results Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self-care. This helped to inform a tool ( PLANS) to tailor access to types of community-based resources which can support LTCM. Conclusions Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention ( PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices. [ABSTRACT FROM AUTHOR]