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Objective For people with type 2 diabetes who are overweight, weight loss increases the likelihood of achieving diabetes remission. The aim here was to draw on the experiences of people living with type 2 diabetes and coaches who deliver type 2 diabetes prevention and remission programmes. This was done to develop a service that increases the proportion of people who achieve remission by identifying an effective weight management service. Research Design and Methods A qualitative researcher and co‐researcher with type 2 diabetes conducted 37 narrative interviews with adults with type 2 diabetes (October 2022–June 2023) and 16 semi‐structured interviews with health coaches delivering type 2 diabetes programmes in England. Data were analysed using Reflexive Thematic Analysis. Participants were diverse in ethnicity, socioeconomic status, age, gender and years since diabetes diagnosis. Results Four themes were generated relating to moments in a person's diabetes care: (1) coming to terms with diagnosis, (2) lightbulb moments, (3) sustaining change as normal and (4) becoming expert/building confidence. These four themes were united under a high‐level interpretivist theme: ‘Same journey, different experience’, capturing the mismatch between a linear rigid care pathway described by coaches and the diversity of experience of people living with type 2 diabetes. Conclusions Coaches and people with type 2 diabetes are aligned on their reports of key moments in adapting to diabetes. Participants’ desire for flexibility in their care contrasted with coach reports of rigid service provision. These insights may enable more people with type 2 diabetes to engage and adhere to weight management services aimed at diabetes remission.

Weight loss programmes can help people achieve remission of type 2 diabetes (T2D). People from underserved communities are less likely to participate in—and may experience poorer outcomes from—weight loss programmes than people from healthier populations already better served by healthcare systems. Unless health services including weight management programmes are based on the needs of the people most in need of them, health inequalities may get worse. Here we describe how PPIE—with a specific focus on reaching the most underserved communities—has shaped a new weight management service for T2D remission and impacted the study design, stimulating new ideas to further engagement and enhance outcomes from remission programmes more broadly. We assess our approach against the UK Standards for Public Involvement in Research and the Diabetes UK Addressing Health Inequalities in Diabetes Through Research guidance, and reflect upon achievements and areas for further development. Plain English summary Clinical research aims to help develop new services for patients or improve existing ones. However, the issues that are researched tend to be those that researchers think are important, not necessarily those patients think are important. In addition, people most in need of healthcare are those who are less likely to take part in clinical research. For example, people from Black and South Asian communities are most at risk of having type 2 diabetes, but they are less likely to take part in type 2 diabetes trials. Involving communities in research can help solve these problems. It takes time to build trust, and a genuine dialogue. In this article we describe how patient and public involvement and engagement (PPIE) has helped shape a new weight loss service for type 2 diabetes remission. We also highlight how listening in a genuine and open way can help produce new ideas for research which could lead to wider improvements in clinical care.

Background Although underserved populations— including those from ethnic minority communities and those living in poverty—have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in primary healthcare research. Methods We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template. Results Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design. Conclusions Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability. Plain English summary The problem People living in poverty, and people from ethnic minority communities may be referred to as ‘underserved’. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities  worse. What we did This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities. What we found We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other’s culture and history makes it easier to work together.

IntroductionPersistent physical symptoms (which cannot be adequately attributed to physical disease) affect around 1 million people (2% of adults) in the UK. They affect patients’ quality of life and account for at least one third of referrals from General Practitioners (GPs) to specialists. These referrals give patients little benefit but have a real cost to health services time and diagnostic resources. The symptoms clinic has been designed to help people make sense of persistent physical symptoms (especially if medical tests have been negative) and to reduce the impact of symptoms on daily life.Methods and analysisThis pragmatic, multicentre, randomised controlled trial will assess the clinical and cost-effectiveness of the symptoms clinic intervention plus usual care compared with usual care alone. Patients were identified through GP searches and mail-outs and recruited by the central research team. 354 participants were recruited and individually randomised (1:1). The primary outcome is the self-reported Physical Health Questionnaire-15 at 52 weeks postrandomisation. Secondary outcome measures include the EuroQol 5 dimension 5 level and healthcare resource use. Outcome measures will also be collected at 13 and 26 weeks postrandomisation. A process evaluation will be conducted including consultation content analysis and interviews with participants and key stakeholders.Ethics and disseminationEthics approval has been obtained via Greater Manchester Central Research Ethics Committee (Reference 18/NW/0422). The results of the trial will be submitted for publication in peer-reviewed journals, presented at relevant conferences and disseminated to trial participants and patient interest groups.Trial registration numberISRCTN57050216.

Background There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research. Methods PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a “you said, we did” impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion. Results In total, 16 PPI members were recruited. Most were White British ( n  = 10), other ethnicities were Asian ( n  = 4), Black African ( n  = 1) and British mixed race ( n  = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a “jargon buster”, an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research. Conclusion Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research. Plain Language Summary Research is needed to understand how inequalities in palliative care can be addressed, so that everyone living with advanced illness can receive the care they need. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist palliative care. Primary care services are grounded in the community they serve and can be the main providers of palliative care, but this is rarely the focus of research. Primary care and palliative care researchers can work together in new ways to do research to address inequalities and improve palliative care in practice. This paper describes the work of the RE-EQUIPP (REducing inEQUalities through Integration of Primary and Palliative Care) Care Partnership. The partnership involved researchers from primary care and palliative care working with people with lived experience of serious illness as patient or carer from three diverse areas of the United Kingdom: (1) London, (2) inner-city Sheffield and (3) Worthing in Sussex, a rural, coastal setting. The project provided opportunity to develop new ways of working and resources for more inclusive and equitable PPI for future palliative care research. Sixteen PPI members from diverse backgrounds and with a range of experience joined the partnership. Workshops were held to understand the barriers to inclusive PPI. New roles and resources were developed, including an Equity, Equality, Diversity and Inclusion Champion role, a “jargon buster”, an animation, and an online recipe book to inform future PPI. Learning from the partnership was used to develop a new framework, which is presented to inform inclusive PPI for palliative care research in the future. This outlines the need for research team commitment and shared vision, adequate resource, careful planning, relationship building and evaluation.

ObjectiveTo assess the clinical effectiveness of non-pharmacological interventions for fatigue in adults with long term medical conditions.DesignSystematic review and network meta-analysis.Data sourcesMedline, Embase, CINAHL, APA PsycInfo, Web of Science Core Collection, and the Cochrane Central Register of Controlled Trials, from database inception to 28 September-3 October 2023, and updated 23-24 September 2024.Eligibility criteria for selecting studiesRandomised controlled trials of non-pharmacological interventions for fatigue in long term medical conditions where fatigue was a criterion for inclusion, the primary target of the intervention, or the primary or co-primary outcome. Excluded were studies of fatigue in people with cancer, in relation to or after infection, or resulting from injuries or developmental disorders. Studies were limited to European-style healthcare systems.Results88 randomised controlled trials were included, comprising 6636 participants for the end of treatment analyses, 1849 participants for the short term (≤3 months after the end of treatment) analyses, and 2322 participants for the long term (>3 months) analyses, allocated to one of 27 interventions. The most common condition studied was multiple sclerosis (51 studies). A range of interventions were identified, and heterogeneity was found within intervention groups and between individual interventions. Interventions varied by duration, delivery methods, and intensity. Compared with usual care, interventions based on cognitive behavioural therapy (CBT) significantly reduced fatigue at the end of treatment (standardised mean difference −0.63, 95% credible interval (CrI) −0.87 to −0.40, 17 studies) and at the long term follow-up (−0.40, −0.63 to −0.21, nine studies). Promotion of physical activity significantly reduced fatigue at all three time points: end of treatment (standardised mean difference −0.32, 95% CrI −0.62 to −0.01, seven studies), short term (−0.51, −0.84 to −0.17, one study), and long term (−0.52, −0.86 to −0.18, two studies). Self-management focusing on energy conservation was not significantly beneficial at the end of treatment (standardised mean difference −0.20, 95% CrI −0.52 to 0.12, 10 studies) or at the short term follow-up (−0.13, −0.51 to 0.25, seven studies) but at longer term follow-up, comparable benefit with other interventions was suggested (−0.42, −0.90 to 0.09, three studies). The standard deviation of the variation between studies in the end of treatment, short term, and long term network meta-analyses indicated moderate heterogeneity of studies in each of the analyses. No significant inconsistency was detected within the networks.ConclusionsInterventions that support individuals to increase physical activity or that are based on CBT were effective in reducing fatigue in people with long term medical conditions. The strength of the evidence was moderate to low. Although relatively few studies in any condition other than multiple sclerosis exist, the magnitude of effect seemed to be similar across different conditions.Systematic review registrationPROSPERO CRD42023440141.

Background This project (named Reinvent) aimed to promote Public Involvement (PI) in health research. Academics worked with a community group, the Eloquent Praise & Empowerment Dance Company, to develop a community partnership with young people from Black African, Asian and Caribbean heritage communities. The goal of this paper is to evaluate the Reinvent project for key learnings on how to engage and build partnerships with young people from Black African, Asian and Caribbean heritage communities. Methods Reinvent developed a steering group which consisted of five young people, one academic, a Race Equality Ambassador and the Director of Eloquent. The steering group co-produced an agenda for two workshops and the evaluation tools used. The content of the workshops included drama exercises, discussions on physical and mental health, nutrition and school-life, short introductions to the concepts of research and PI, and group work to critique and improve a video currently used to promote PI in health research to young people. The evaluation tools included using the ‘Cube’ evaluation framework, video-blogging and collecting anonymous feedback. Findings The responses to the ‘Cube’ evaluation framework were positive across all four domains (agenda, voice, contribute change) in both workshops. A few of the young people described having a better understanding of the meaning and practice of PI in a video-blog. The anonymous feedback suggested that the workshops had increased young people’s confidence in sharing their thoughts and opinions about health and PI. Conclusion Reinvent has shown that academic institutions and young people from an under-served community can partner to co-design workshops and apply evaluation tools. Working with young people in an environment in which they were comfortable, and by researchers joining in with the activities that the young people enjoyed (such as dance), enabled more informal and open conversations to develop. More work is needed to build upon this project so that young people can feel confident and supported to get involved in PI activities relating to research. Plain English summary What were the aims of this project? This project (named Reinvent) involved researchers working with the Eloquent Praise & Empowerment Dance Company to develop a partnership with young people from Black African, Asian and Caribbean heritage communities. The aim of this paper is to evaluate the Reinvent project for key learnings on how to engage with young people from Black African, Asian and Caribbean heritage communities in public involvement activities for research. How did we do this project? To plan the project we had a steering group with membership from young people from the dance company working alongside researchers. The steering group worked together to plan two workshops and agreed the tools to evaluate them. The content of the workshops included drama exercises, discussions on health, nutrition and school-life, short introductions to research and Public Involvement (PI) and group work to consider and improve a video promoting PI. The evaluation tools included answering four questions, video-blogging and collecting anonymous feedback using a post-box. What did we learn? The responses to the ‘Cube’ evaluation framework were positive across all four domains (agenda, voice, contribute change). A few of the young people described having a better understanding of the meaning and practice of PI in a video-blog. The anonymous feedback suggested that the workshops had increased young people’s confidence in sharing their thoughts and opinions about health and PI.

Background People from ethnic minority and socioeconomically deprived backgrounds remain underrepresented in primary healthcare research despite experiencing worse health outcomes and healthcare experiences. Traditional engagement approaches often maintain power imbalances by keeping control within academic institutions, failing to achieve meaningful representation or change. Aim This paper describes the iterative development of a model of community engagement across four research projects, aimed at increasing research participation from underserved communities through culturally appropriate co-design and building reciprocal academic-community relationships. Methods Using Participatory Action Research methodology, we developed the IBISES model and Community Research Link Worker (CRLW) role through partnerships with voluntary sector organisations serving Black African and African Caribbean, Roma, Chinese, and South Asian communities in South Yorkshire. CRLWs were identified through community organisations, received research training, and joined project teams to lead recruitment, data collection, and support analysis. After each research activity, we conducted debriefing discussions and team meetings to refine the approach. Results The CRLW approach was implemented across four studies: a prostate cancer priority-setting project with African &Caribbean men, a contraception research study with women from ethnic minorities, a lung health priority-setting initiative with the Roma community, and a photovoice study examining diverse experiences of aging and dementia services. These projects demonstrated the CRLW model’s effectiveness in accessing traditionally excluded communities, uncovering crucial cultural contexts, and generating meaningful research outputs and community impacts. Through iterative development, we established the IBISES model (Identify community, Build relationships, Investment in training, Support CRLWs, Empower through co-production, Sustain relationships), which provides a framework for implementing the CRLW approach. Conclusion The CRLW role enables authentic power-sharing in research, addressing both moral imperatives for inclusion and practical needs for representative evidence. By investing in communities and recognising cultural expertise, this approach moves research engagement toward genuine citizen control and partnership. The IBISES model offers a practical framework for researchers seeking to enhance inclusivity while potentially contributing to greater diversity in academic research careers over time. Further work is needed to explore scalability across different research contexts and evaluate the impact on CRLWs themselves. Plain English summary The problem People from ethnic minority backgrounds and those facing economic hardship are often left out of health research, even though they tend to have worse health outcomes. Traditional research methods don’t meaningfully include these communities. The solution Researchers developed a new model called IBISES and created a role called “Community Research Link Workers” (CRLWs). These are people from the communities themselves who are trained to help with research projects. How it happened The researchers partnered with community organizations serving Black African, Caribbean, Roma, Chinese, and South Asian communities in South Yorkshire. They identified community members to become CRLWs, trained them in research methods, and made them full members of research teams. These CRLWs then led efforts to recruit participants, collect data, and help analyse results. What they found This approach was tested across four different health studies - covering topics like prostate cancer, contraception, lung health, and dementia services. The CRLW model proved effective at reaching communities that are usually excluded from research and uncovered important cultural insights that wouldn’t have emerged otherwise. The IBISES framework This was developed into step-by-step approach that researchers could use again: Identify communities, Build relationships, Invest in training, Support the link workers, Empower through working together, and Sustain the relationships over time. Why it matters This approach genuinely shares power with communities rather than just consulting them, leading to better research that represents diverse populations. It could also help more people from these communities eventually pursue research careers themselves. The researchers conclude this model offers a practical way for other researchers to make their work more inclusive and representative.

People with multiple and persistent physical symptoms have impaired quality of life and poor experiences of health care. We aimed to evaluate the effectiveness of a community-based symptom-clinic intervention in people with multiple and persistent physical symptoms, hypothesising that this symptoms clinic plus usual care would be superior to usual care only. The Multiple Symptoms Study 3 was a pragmatic, multicentre, parallel-group, individually randomised controlled trial conducted in 108 general practices in the UK National Health Service in four regions of England between Dec 6, 2018, and June 30, 2023. Participants were individually randomised (1:1) to the symptom-clinic intervention plus usual care or to usual care only via a computer-generated, pseudo-random list stratified by trial centre. Allocation was done by the trial statistician and concealed with a centralised, web-based randomisation system; masking participants was not possible due to the nature of the intervention. The symptom-clinic intervention was a sequence of up to four medical consultations that aimed to elicit a detailed clinical history, fully hear and validate the participant, offer rational explanations for symptoms, and assist the participant to develop ways of managing their symptoms; it was delivered by general practitioners with an extended role. The primary outcome was Patient Health Questionnaire-15 (PHQ-15) score 52 weeks after randomisation, analysed by intention to treat. The trial is registered on the ISRCTN registry (ISRCTN57050216). 354 participants were randomly assigned; 178 (50%) were assigned to receive the community-based symptoms clinic plus usual care and 176 (50%) were assigned to receive usual care only. At the primary-outcome point of 52 weeks, PHQ-15 scores were 14·1 (SD 3·7) in the group receiving usual care and 12·2 (4·5) in the group receiving the intervention. The adjusted between-group difference of –1·82 (95% CI –2·67 to –0·97) was statistically significantly in favour of the intervention group (p<0·0001). There were 39 adverse events in the group receiving usual care and 36 adverse events in the group receiving the intervention. There were no statistically significant between-group differences in the proportion of participants who had non-serious adverse events (–0·03, 95% CI –0·11 to 0·05) or serious adverse events (0·02, –0·02 to 0·07). No serious adverse event was deemed to be related to the trial intervention. Our symptom-clinic intervention, which focused on explaining persistent symptoms to participants in order to support self-management, led to sustained improvement in multiple and persistent physical symptoms. UK National Institute for Health and Care Research.

BackgroundAccessible contraception is critical for promoting the health and well-being of women and their families. In the UK, contraception is free at the point of access, but only 55% of pregnancies are planned, with negative implications for maternal and infant outcomes. In general, women from ethnic minorities use contraceptives less than white women. Barriers to the uptake of contraceptives have been identified, including perceived poor information from healthcare professionals and concerns about side effects. However, most studies do not include representative proportions of women from ethnic minorities. Evidence suggests that ethnic minority (EM) women feel targeted and coerced by healthcare professionals regarding contraception.MethodsA systematic search of Medline, Embase, and PsycINFO via Ovid, CINAHL, and Web of Science was conducted to identify primary qualitative and mixed-methods studies exploring ethnic minority women’s experience of contraception in the UK. The data were charted using thematic analysis, using both summary and synthesis.Results and conclusions16 studies met the inclusion criteria, including the perspectives of 717 participants from an ethnic minority. Four overarching themes were developed: contraceptive knowledge, beliefs, family, and services. Similar to women in general, ethnic minority women have concerns about side effects, especially infertility, value the perspectives of their peers and male partners, and express a preference for female healthcare professionals. Novel perspectives included conflicting ideas about the influence of religion and stereotyping of ethnic minority women. Culturally competent consultations and a better understanding of hormonal hesitancy are essential.