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Background Research priority setting is a useful approach to decide which unanswered questions are most worth trying to solve through research. The aim is to reduce bias in the research agenda. Traditionally, research was decided by funders, policymakers, and academics with limited influence from other stakeholders like people living with health conditions, caregivers, or the community. This can lead to research gaps that fail to address these important stakeholder needs. The objective of this study is to identify the top research priorities for Rheumatic and Musculoskeletal Disease (RMD) research in Ireland. Methods The process framework included a design workshop, two online surveys and a review of the literature. Participants 545 people completed the first survey to identify RMD research topics relevant to Ireland, of which 72% identified as a person living with RMD. 460 people completed the second survey to prioritise these research topics. Results The first survey had 2185 research topics submitted. These were analysed and grouped into 38 topic areas which were ranked in the second survey. The top three research priorities for RMD research in Ireland focused on preventing RMD progression, RMD diagnosis and its impact, and pain management. Conclusions The prioritised research topics indicate important areas of RMD research for Ireland. Research funded in response to these co-created research priorities will have increased relevance and impact.

Background Co‐design and associated terms are increasingly being used to facilitate values‐based approaches to health‐care improvement. It is messy and complex, involving diverse actors. Methods We explore the notion that initiatives have outcomes other than initially planned is neither new nor novel but is overlooked when thinking about co‐design. We explore some of the unintended consequences and outline some optimal conditions that can mitigate challenges. Discussion Although co‐design approaches are being applied in health care, questions remain regarding its ability to produce gains in health outcomes. Little is known about determining whether co‐design is the most suitable approach to achieve the given project goals, the levels of involvement required to realize the benefits of co‐design or the potential unintended consequences. There is a risk of further marginalizing or adding burden to under‐represented populations and/or over‐researched populations. Conclusion Undertaking a co‐design approach without the optimal conditions for inclusive involvement by all may not result in an equal partnership or improve health or care quality outcomes. Co‐design requires on‐going reflective discussions and deliberative thinking to remove any power imbalances. However, without adequate resources, a focus on implementation and support from senior leaders, it is a tough ask to achieve. Patient or Public Contribution This viewpoint article was written by two academics who have undertaken a significant amount of PPI and co‐design work with members of the public and patient's right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.

Objectives Only rudimentary tools exist to support health system organizations to evaluate their public and patient engagement (PPE) activities. This study responds to this gap by developing a generic evaluation tool for use in a wide range of organizations. Methods The evaluation tool was developed through an iterative, collaborative process informed by a review of published and grey literature and with the input of Canadian PPE researchers and practitioners. Over a 3‐year period, structured e‐mail, telephone and face‐to‐face exchanges, including a modified Delphi process, were used to produce an evaluation tool that includes core principles of high‐quality engagement, expected outcomes for each principle and three unique evaluation questionnaires that were tested and revised with input from 65 end users. Results The tool is structured around four core principles of ‘quality engagement’: (i) integrity of design and process; (ii) influence and impact; (iii) participatory culture; and (iv) collaboration and common purpose. Three unique questionnaires were developed to assess each of these four evaluation domains from the following perspectives: (i) those who participate in PPE activities; (ii) those who plan, execute or sponsor PPE activities within organizations; and (iii) those who provide the leadership and capacity for PPE within their organizations. Conclusions This is the first known collaboration of researchers and practitioners in the co‐design of a comprehensive PPE evaluation tool aimed at three distinct respondent groups and for use in a wide range of health system organization settings.

The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI. Highlights A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.

Introduction Patient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition that PPI is the right thing to do for both moral and practical reasons. The aim of this review of reviews is to examine how PPI can be done ‘properly’ by looking at the evidence that exists from published reviews and assessing it against the UK Standards for Public Involvement in Research, as well as examining the specific features of population health research that can make PPI more challenging. Methods A review of reviews and development of best practice guidance was carried out following the 5-stage Framework Synthesis method. Results In total 31 reviews were included. There is a lack of current research or clarity around Governance and Impact when findings are mapped against UK Standards for Public Involvement in Research. It was also clear that there is little knowledge around PPI with under-represented groups. There are gaps in knowledge about how to ensure key specific attributes of population health research are addressed for PPI team members – particularly around how to deal with complexity and the data-driven nature of the research. Four tools were produced for researchers and PPI members to further improve their PPI activity within population health research and health research more generally, including a framework of recommended actions to address PPI in population health research, and guidance on integrating PPI based on the UK Standards for Public Involvement in Research. Conclusions Facilitating PPI in population health research is challenging due to the nature of this type of research and there is far less evidence on how to do PPI well in this context. The tools can help researchers identify key aspects of PPI that can be integrated when designing PPI within projects. Findings also highlight specific areas where more research or discussion is needed.

ObjectivesWhile documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information.Design and settingA before and after comparison of PPI reported in research papers published in The BMJ before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers.ResultsBetween 1 June 2013 and 31 May 2014, The BMJ published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, The BMJ published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors.ConclusionsInfrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction of The BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

International government guidance recommends patient and public involvement (PPI) to improve the relevance and quality of research.  PPI is defined as research being carried out 'with' or 'by' patients and members of the public rather than 'to', 'about' or 'for' them ( http://www.invo.org.uk/). Patient involvement is different from collecting data from patients as participants.  Ethical considerations also differ.  PPI is about patients actively contributing through discussion to decisions about research design, acceptability, relevance, conduct and governance from study conception to dissemination.  Occasionally patients lead or do research.  The research methods of PPI range from informal discussions to partnership research approaches such as action research, co-production and co-learning. This article discusses how researchers can involve patients when they are applying for research funding and considers some opportunities and pitfalls.  It reviews research funder requirements, draws on the literature and our collective experiences as clinicians, patients, academics and members of UK funding panels.

Background Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality. Methods This rapid review was pre‐registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer‐reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE‐II) Instrument. Data was analysed using descriptive analyses and narrative synthesis. Results We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context‐specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods. Conclusion This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods. Patient and Public Involvement Adolescent co‐researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer‐reviewed articles at the title and screening stage and 10% at full‐text screening stage. C. W. extracted data from 10% of the included guidelines. Both co‐researchers reviewed and shared their feedback on the article and are co‐authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review.

Background Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under‐involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research. Objective We conducted an umbrella review of reviews to consolidate the review‐level evidence on the barriers to meaningful involvement of adolescents in health research. Methods We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review. Results We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands. Conclusion Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research. Public and Patient Involvement in the Review Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and screening stage, screened 10% of full‐text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.

Background Although not an inevitable part of ageing, frailty is an increasingly common condition in older people. Frail older patients are particularly vulnerable to the adverse effects of hospitalisation, including deconditioning, immobility and loss of independence (Chong et al, J Am Med Dir Assoc 18:638.e7–638.e11, 2017). The ‘Systematic Approach to improving care for Frail older patients’ (SAFE) study co-designed, with public and patient representatives, quality improvement initiatives aimed at enhancing the delivery of care to frail older patients within an acute hospital setting. This paper describes quality improvement initiatives which resulted from a co-design process aiming to improve service delivery in the acute setting for frail older people. These improvement initiatives were aligned to five priority areas identified by patients and public representatives. Methods The co-design work was supported by four pillars of effective and meaningful public and patient representative (PPR) involvement in health research (Bombard et al, Implement Sci 13:98, 2018; Black et al, J Health Serv Res Policy 23:158–67, 2018). These pillars were: research environment and receptive contexts; expectations and role clarity; support for participation and inclusive representation and; commitment to the value of co-learning involving institutional leadership. Results Five priority areas were identified by the co-design team for targeted quality improvement initiatives: Collaboration along the integrated care continuum; continence care; improved mobility; access to food and hydration and improved patient information. These priority areas and the responding quality improvement initiatives are discussed in relation to patient-centred outcomes for enhanced care delivery for frail older people in an acute hospital setting. Conclusions The co-design approach to quality improvement places patient-centred outcomes such as dignity, identity, respectful communication as well as independence as key drivers for implementation. Enhanced inter-personal communication was consistently emphasised by the co-design team and much of the quality improvement initiatives target more effective, respectful and clear communication between healthcare personnel and patients. Measurement and evaluation of these patient-centred outcomes, while challenging, should be prioritised in the implementation of quality improvement initiatives. Adequate resourcing and administrative commitment pose the greatest challenges to the sustainability of the interventions developed along the SAFE pathways. The inclusion of organisational leadership in the co-design and implementation teams is a critical factor in the success of interventions targeting service delivery and quality improvement.