Introduction Collective patient participation, such as patient participation in policy making, has become increasingly important to achieve high-quality care. However, there is little knowledge on how to let patients participate in a meaningful manner at this level. The aim of this systematic literature review was to provide an overview of barriers, facilitators, and associated impact of collective patient participation. Methods PubMed and EMBASE were searched until May 2023 for studies that evaluated collective patient participation. Study characteristics, methods for patient participation, barriers and facilitators, and impact (if measured) of patient participation were extracted from the articles. Results We included 59 articles. Identified barriers and facilitators of collective patient participation were grouped into five categories: (1) preconditions for patient participation, (2) strategy for patient participation, (3) preparation of patients and staff for patient participation, (4) support for patients and staff during patient participation, and (5) evaluation of patient participation. Impact of patient participation was reported in 34 included studies at three levels: quality of care and research, the team and organization, and the participants themselves. Only three studies reported quantitative outcomes. Conclusion Interestingly, similar challenges were experienced during a period of twenty years, indicating that little progress has been made in structuring patient participation. Our overview of barriers and facilitators will therefore help to improve and structure collective patient participation.

Aims and Objectives The aim of this study was to assess methodological quality of all currently available guidelines and consensus statements for IAD using the Appraisal of Guidelines, Research and Evaluation (AGREE) II and the AGREE Recommendation Excellence (AGREE-REX) instruments. Background Globally, incontinence-associated dermatitis (IAD) is a significant health challenge. IAD is a complex healthcare problem that reduces quality of life of patients, increases healthcare costs and prolongs hospital stays. Several guidelines and consensus statements are available for IAD. However, the quality of these guidelines and consensus statements remains unclear. Design A systematic review of guidelines and consensus statements. Methods Our study was undertaken using PRISMA guidelines. We searched seven electronic databases. Guidelines and consensus statements had to be published in English, Chinese or German languages. Five independent reviewers assessed the methodological quality of guidelines and consensus statements using the AGREE II and AGREE-REX instruments. Mean with standard deviation (SD) and median with interquartile range (IQR) were calculated for descriptive analyses. We generated bubble plots to describe the assessment results of each domain of each guideline and consensus statement. Results We included ten guidelines and consensus statements. The NICE guidelines, obtained the highest scores, fulfilled 86.11%-98.61% of criteria in AGREE II and 76.67%-91.11% for AGREE-REX. In the domains 'Stakeholder Involvement' (4.39 +/- 1.64), 'Rigor of Development' (3.38 +/- 1.86), 'Applicability' (3.62 +/- 1.64), 'Editorial Independence' (3.91 +/- 2.56) and 'Values and Preferences' (2.98 +/- 1.41), the remaining guidelines and consensus statements showed deficiencies. Conclusions Altogether, this study demonstrated that the currently available guidelines and consensus statements for IAD have room for methodological improvement. NICE guidelines on faecal incontinence and urinary incontinence have better quality. Remaining guidelines and consensus statements showed substantial methodological weaknesses, especially the domains of 'Stakeholder Involvement', 'Rigor of Development', 'Applicability', 'Editorial independence' and 'Values and Preferences'. This study was registered on INPLASY. (Registration number: INPLASY202190078). Relevance to Clinical Practice The currently available guidelines and consensus statements on IAD have room for methodological improvement.

Many policies promote patient and public involvement (PPI) in health research and healthcare provision. However, research points to uncertainties about its impact. The aim of the article was to compare what types of impact have been reported in reviews of PPI in health research and healthcare, respectively, and to map differences and similarities between the review studies. A review of reviews was undertaken with a search strategy based on the PCC mnemonic for scoping reviews. Four online databases were searched. Studies published in English between the years 2000-2020, using a review-based method and aiming to demonstrate impact of PPI were included, resulting in sixty-one articles. More reviews of PPI impact in healthcare than in health research were found, although the latter included a larger number of empirical studies. Systematic reviews, quality assessment and quantitative studies were less common in health research. Many original studies were from the United Kingdom. In health research, reported impacts most often related to research design and delivery, while in healthcare the most commonly reported impacts were individual health outcomes/clinical outcomes. However, there is still uncertainty about the strength of evidence for PPI, in particular when it comes to collective involvement in healthcare, that is in policymaking and service improvement initiatives at hospitals or the like.

Background Community involvement is an important component of health programme development and implementation, including those focused on chronic condition treatment and management. Yet, few studies explore the manifestations of community involvement in chronic care programmes. Our review aims to examine the evidence on how communities are involved in planning and implementing chronic condition programmes in high and upper-middle income countries. Methods Eligible studies included those that involved the community in the planning, implementation, monitoring and evaluation of health services, policy or health interventions. We searched Medline, Embase, Global Health, Scopus, and LILACs from 2000 to 2016, independently screened articles for inclusion, conducted data extraction, and assessed studies for risk of bias. Results 27,232 records were identified and after screening, 32 met inclusion criteria. We conducted a narrative synthesis to report on the forms and processes of community involvement used across mental health programmes and contrast this with the paucity of evidence on comparable programmes addressing other chronic conditions. Challenges reported included user factors, organisational factors, and social challenges such as stigma. Conclusion Our review adds to the evidence supporting community involvement in chronic condition management and the processes that contribute to successful and sustainable involvement. We report on a model, derived from inductive analysis, that considers social and cultural components, organisational factors and stakeholder relationships as underpinning the development of community interventions across the care continuum.

Background Public involvement in large-scale changes (LSC) to health services is strongly promoted – and even mandated – in several health systems. This scoping review aimed to describe the evidence about how public involvement is conceptualised and conducted in LSC, with what impact, and how different stakeholders perceived this process. Methods After searching eight databases, 34 publications were included. Data were extracted and charted using a standardised form. Findings from the literature were discussed with frontline stakeholders. Results Public involvement remains poorly defined and its aims lack clarity in LSC. Public meetings are most often used to gather public views but raise the issue of representativeness. However, evidence in the literature is scarce about which involvement methods – informative and deliberative – are appropriate for the different stages of the LSC and with what impact. In several cases, the involved public felt they had no influence on decision-making regarding LSC proposals, sometimes leading to an environment of mistrust. In those instances, the public understood the technical arguments for change and actively questioned them, opposed LSC plans and sought alternative routes to voice their views. Conclusion More research and consideration are needed regarding who should be involved, with what purpose and how. We argue that in practice two models of involvement, invited and uninvited participation, coexist and therefore interactions between the two should be given further consideration in LSC.

Objectives To review the evidence on public involvement in the systematic review process in health and social care; to examine the different methods, levels and stages of involving the public; to synthesise the contributions of the public, as well as the identified tensions, facilitating strategies and recommendations for good practice. Method Systematic literature search and narrative review. Findings Seven case examples were found covering the following review topics: patients’ perspectives on electro-convulsive therapy; user involvement in nursing, midwifery and health visiting research; treatments for degenerative ataxias; teaching, learning and assessment of law in social work education; HIV health promotion for men who have sex with men; the conceptualisation, measurement, impact and outcomes of public involvement in health research; methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. The public was found to contribute to systematic reviews by: refining the scope of the review; suggesting and locating relevant literature; appraising the literature; interpreting the review findings; writing up the review. Numerous tensions, facilitating strategies and recommendations were identified. Conclusions The issues raised in this paper should assist researchers in developing and conducting systematic reviews with the involvement of the public.

Objective To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies. Design Systematic literature search and narrative review. Findings Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents’ experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified. Conclusions The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out.