Background: The COVID-19 pandemic presented policymakers with time-sensitive decision problems and a rapidly increasing volume of research, not all of which was robust, or relevant to local contexts. A bespoke evidence review process supporting stakeholder engagement was developed as part of the Wales COVID-19 Evidence Centre (WCEC), which could flexibly react to the needs of decision-makers, to address urgent requests within days or months as required. Aims: To describe and appraise the WCEC review process and methods and identify key learning points. Methods: Three types of rapid review products were used, which could accommodate the breadth of decision problems and topics covered. Stakeholder (including public) engagement was integrated from the onset and supported throughout. The methods used were tailored depending on the needs of the decision-maker, type of research question, timeframe, and volume and type of evidence. We appraised the overall process and compared the methods used with the most recent and relevant best practice guidance. Results: The remote collaboration between research teams, establishing a clear pathway to impact upfront, and the strong stakeholder involvement embedded in the review process were considered particular strengths. Several key learning points were identified, which focused on: enhancing stakeholders' abilities to identify focused policy-relevant research questions; the collection and storage of review protocols at a central location; tightening quality assurance process regarding study selection, data extraction and quality assessment; adequate reporting of methodological shortcuts and understanding by stakeholders; piloting of an algorithm for assigning study design descriptors, and a single quality assessment tool covering multiple study designs; and incorporate, where appropriate an assessment of the confidence in the overall body of evidence using GRADE or similar framework. Conclusions: The review process enabled a high volume of questions that were directly relevant to policy and clinical decision making to be addressed in a timely manner using a transparent and tailored approach.

Background: Women with a history of hypertensive disorders of pregnancy are at an increased risk of cardiovascular disease. Although clinical practice guidelines for management of hypertensive disorders of pregnancy recommend involvement of a general practitioner for ongoing cardiovascular disease preventative care, there are no intervention strategies embedded within primary care aimed at improving risk assessment or management for women after hypertensive disorders of pregnancy. The study aim was to co-design an intervention to improve implementation of cardiovascular disease risk assessment and management following hypertensive disorders of pregnancy for primary care settings in a local health district in New South Wales, Australia. Method: Using the Integrated Knowledge Translation framework, a series of five co-design meetings with the investigative team and end users were conducted online. Meetings were informed by the Behaviour Change Wheel framework for intervention development and incorporated research findings from a systematic review and meta-analysis, surveys and an online discussion. Data from activities and audio recordings following each meeting were analysed thematically using inductive-deductive thematic analysis. Results were summarized after each meeting, and findings used to inform ongoing intervention development. Results: The 18 end users included women with lived experience of hypertensive disorders of pregnancy (n = 8), obstetricians (n = 2), midwives (n = 5) and general practitioners (n = 3). Target priorities were to improve communication between hospital staff and general practitioners following the occurrence of hypertensive disorders of pregnancy and increase the knowledge of general practitioners and women regarding cardiovascular disease prevention after cardiometabolic pregnancy complications. Part 1 of the intervention is set within the hospital setting and delivered via physical resources to address the communication gap between hospital and primary care providers about the occurrence of hypertensive disorders of pregnancy. Part 2 is delivered via an update to an existing general practice education platform and through resources for use within consultations to provide education for women and general practitioners about cardiovascular disease prevention after hypertensive disorders of pregnancy. Conclusion: The Integrated Knowledge Translation and Behaviour Change Wheel frameworks aided in the development of a targeted intervention to improve implementation of cardiovascular risk assessment and management for women after hypertensive disorders of pregnancy, based on gaps identified in current primary care practice.

Introduction: Patient and public involvement (PPI) is considered part of best-practice for health care delivery, research and policy. However, people with dementia are frequently excluded from PPI initiatives. While recent studies have investigated PPI of people with dementia in research, little is known about their involvement at the macro-level of care, that is, in health policy and guideline development. This scoping review maps the evidence on PPI of people with dementia at the macro-level of care, focusing on the methods, outcomes and mechanisms of involvement. Methods: We systematically searched MEDLINE via PubMed, CINAHL, the Cochrane Library and GeroLit. Additionally, we performed forward and backward citation searching, manually tracked individual references, searched abstract books and yearbooks, and contacted authors of included reports to seek additional references. We analysed each method's mechanisms of involvement to assess whether measures were taken to maximise effective information transfer. Results: We included 43 reports and identified 35 involvement methods, which we structured into six categories: 'focus groups and interviews', 'surveys and questionnaires', 'public events', 'meetings with decision-makers', 'serving as members of working groups', and 'multiple-step methods'. Most of the involvement took the form of consultations during the early stages of policy or guideline development. All involvement methods required verbal communication skills, almost all of the participants had mild dementia. We found that most reports did not clearly state the involvement outcomes. While a majority of methods had some facilitation in place to elicit information from participating people with dementia, only nine methods used a structured aggregation to synthesise participants' contributions into a joint statement. Conclusion: We found limited evidence of dementia-adapted involvement. Future research might focus on exploring the mechanisms of involvement to adapt methods to specific target groups, such as people with impaired verbal communication or advanced dementia. We recommend using existing guidance to report PPI initiatives, as the reporting was often incomplete, which limits reproducibility. Patient or public contribution: We discussed both our study protocol and our results with a working group of people with dementia, who provided valuable insight for our data interpretation. Our findings can serve such groups for future consultations.

Background: Care for older adults is high on the global policy agenda. Active involvement of older adults and their informal caregivers in policy-making can lead to cost-effective health and long-term care interventions. Yet, approaches for their involvement in health policy development have yet to be extensively explored. This review maps the literature on strategies for older adults (65+ years) and informal caregivers' involvement in health policy development. Method: As part of the European Union TRANS-SENIOR program, a scoping review was conducted using the Joanna Briggs Institute's methodology. Published and grey literature was searched, and eligible studies were screened. Data were extracted from included studies and analysed using the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare. Results: A total of 13 engagement strategies were identified from 11 publications meeting the inclusion criteria. They were categorized as "traditional", "deliberative" and "others", adopting the World Bank's categorization of engagement methods. Older adults and informal caregivers are often consulted to elicit opinions and identify priorities. However, their involvement in policy formulation, implementation and evaluation is unclear from the available literature. Findings indicate that older adults and their informal caregivers do not often have equal influence and shared leadership in policy-making. Conclusion: Although approaches for involving older adults and their informal caregivers' involvement were synthesized from literature, we found next to no information about their involvement in policy formulation, implementation and evaluation. Findings will guide future research in addressing identified gaps and guide policy-makers in identifying and incorporating engagement strategies to support evidence-informed policy-making processes that can improve health outcomes for older adults/informal caregivers.

Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults. Methods: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. Conclusion: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. Patient or public contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.

Context: Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers' participation is connected to what might be called a voice. Objectives: To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted. Methods: The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach. Results: Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers. Conclusion: The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.

Issue addressed: Despite increasing interest in citizen science as an approach to engage members of the public in research and decision making about health and wellbeing, there is a lack of practical evidence to guide policy and practice organisations to utilise these approaches. In this study we investigated how and why citizen science came to be incorporated into the work of two policy organisations. Methods: We offer two in-depth case studies of Australian government organisations which have utilised citizen science in environmental and healthy ageing policy. Interviews with organisational informants and relevant documents were analysed inductively to explore how citizen science came to be adopted, legitimised and supported. Results: Citizen science was utilised to address multiple organisational objectives, including increasing community participation in science; enhancing individuals' wellbeing, learning, and skills, and generating data to support research and policy in a relatively cost-effective manner. In both cases, grant funding was a mechanism to support citizen science, with project delivery facilitated through academic-policy partnerships and led by external academic or community partners. Conclusion: Although citizen science is relatively new in policy and practice settings, this study underscores the value of these approaches in realising co-benefits for organisations, academics, and community members. The support and advocacy of senior managers as 'champions', and a willingness to invest in trialling new approaches to address policy problems are necessary ingredients to foster acceptance and legitimacy of citizen science. SO WHAT?: Citizen science initiatives can be strategically utilised by health promotion organisations to enact priorities related to genuine community involvement, support research and innovation and facilitate collaboration and partnerships between academic, policy and community stakeholders.

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.

BackgroundChronic disease management (CDM) through sustained knowledge translation (KT) interventions ensures long-term, high-quality care. We assessed implementation of KT interventions for supporting CDM and their efficacy when sustained in older adults.MethodsDesign: Systematic review with meta-analysis engaging 17 knowledge users using integrated KT.Eligibility criteria: Randomized controlled trials (RCTs) including adults (> 65 years old) with chronic disease(s), their caregivers, health and/or policy-decision makers receiving a KT intervention to carry out a CDM intervention for at least 12 months (versus other KT interventions or usual care).Information sources: We searched MEDLINE, EMBASE, and the Cochrane Central Register of Controlled Trials from each database's inception to March 2020.Outcome measures: Sustainability, fidelity, adherence of KT interventions for CDM practice, quality of life (QOL) and quality of care (QOC).Data extraction, risk of bias (ROB) assessment: We screened, abstracted and appraised articles (Effective Practice and Organisation of Care ROB tool) independently and in duplicate. Data synthesis: We performed both random-effects and fixed-effect meta-analyses and estimated mean differences (MDs) for continuous and odds ratios (ORs) for dichotomous data.ResultsWe included 158 RCTs (973,074 participants [961,745 patients, 5540 caregivers, 5789 providers]) and 39 companion reports comprising 329 KT interventions, involving patients (43.2%), healthcare providers (20.7%) or both (10.9%). We identified 16 studies described as assessing sustainability in 8.1% interventions, 67 studies as assessing adherence in 35.6% interventions and 20 studies as assessing fidelity in 8.7% of the interventions. Most meta-analyses suggested that KT interventions improved QOL, but imprecisely (36 item Short-Form mental [SF-36 mental]: MD 1.11, 95% confidence interval [CI] [- 1.25, 3.47], 14 RCTs, 5876 participants, I-2 = 96%; European QOL-5 dimensions: MD 0.01, 95% CI [- 0.01, 0.02], 15 RCTs, 6628 participants, I-2 = 25%; St George's Respiratory Questionnaire: MD - 2.12, 95% CI [- 3.72, - 0.51] 44 12 RCTs, 2893 participants, I-2 = 44%). KT interventions improved QOC (OR 1.55, 95% CI [1.29, 1.85], 12 RCTS, 5271 participants, I-2 = 21%).ConclusionsKT intervention sustainability was infrequently defined and assessed. Sustained KT interventions have the potential to improve QOL and QOC in older adults with CDM. However, their overall efficacy remains uncertain and it varies by effect modifiers, including intervention type, chronic disease number, comorbidities, and participant age.Systematic review registrationPROSPERO CRD42018084810.

Background: Chronic disease management (CDM) through sustained knowledge translation (KT) interventions ensures long-term, high-quality care. We assessed implementation of KT interventions for supporting CDM and their efficacy when sustained in older adults. Methods: Design: Systematic review with meta-analysis engaging 17 knowledge users using integrated KT. Eligibility criteria: Randomized controlled trials (RCTs) including adults (> 65 years old) with chronic disease(s), their caregivers, health and/or policy-decision makers receiving a KT intervention to carry out a CDM intervention for at least 12 months (versus other KT interventions or usual care). Information sources: We searched MEDLINE, EMBASE, and the Cochrane Central Register of Controlled Trials from each database's inception to March 2020. Outcome measures: Sustainability, fidelity, adherence of KT interventions for CDM practice, quality of life (QOL) and quality of care (QOC). Data extraction, risk of bias (ROB) assessment: We screened, abstracted and appraised articles (Effective Practice and Organisation of Care ROB tool) independently and in duplicate. Data synthesis: We performed both random-effects and fixed-effect meta-analyses and estimated mean differences (MDs) for continuous and odds ratios (ORs) for dichotomous data. Results: We included 158 RCTs (973,074 participants [961,745 patients, 5540 caregivers, 5789 providers]) and 39 companion reports comprising 329 KT interventions, involving patients (43.2%), healthcare providers (20.7%) or both (10.9%). We identified 16 studies described as assessing sustainability in 8.1% interventions, 67 studies as assessing adherence in 35.6% interventions and 20 studies as assessing fidelity in 8.7% of the interventions. Most meta-analyses suggested that KT interventions improved QOL, but imprecisely (36 item Short-Form mental [SF-36 mental]: MD 1.11, 95% confidence interval [CI] [- 1.25, 3.47], 14 RCTs, 5876 participants, I2 = 96%; European QOL-5 dimensions: MD 0.01, 95% CI [- 0.01, 0.02], 15 RCTs, 6628 participants, I2 = 25%; St George's Respiratory Questionnaire: MD - 2.12, 95% CI [- 3.72, - 0.51] 44 12 RCTs, 2893 participants, I2 = 44%). KT interventions improved QOC (OR 1.55, 95% CI [1.29, 1.85], 12 RCTS, 5271 participants, I2 = 21%). Conclusions: KT intervention sustainability was infrequently defined and assessed. Sustained KT interventions have the potential to improve QOL and QOC in older adults with CDM. However, their overall efficacy remains uncertain and it varies by effect modifiers, including intervention type, chronic disease number, comorbidities, and participant age. Systematic review registration: PROSPERO CRD42018084810.

Objective: The objective of this review was to determine whether electronic health (eHealth) educational interventions about infant procedural pain and pain management impact parental outcomes (eg, mental health, knowledge uptake), eHealth outcomes (eg, acceptance, use), and pain management outcomes (eg, parental involvement, infant pain response).Introduction: Pain in infants is a common concern for parents. Routine postpartum care for infants in early life requires them to endure painful procedures, such as immunizations, yet infants often receive little to no pain management. Parents are an essential component of effective pain management, although they may not be aware of the roles they play. Despite the increased number of eHealth resources available to educate parents about infant pain management, their impact has yet to be synthesized.Inclusion criteria: This review considered studies that evaluated eHealth educational interventions targeted at parents during pregnancy and up to 1 year postpartum. Interventions included, but were not limited to, mobile applications, web-based applications, websites, videos, interactive training, hands-on direct simulation, short message service (SMS), and desktop applications. Primary outcomes included parental outcomes (eg, stress or anxiety, self-efficacy, knowledge, attitudes), eHealth outcomes (eg, acceptance, use), and pain management outcomes (eg, parental involvement, infant pain response). Experimental, quasi-experimental, and observational study designs were included.Methods: MEDLINE, CINAHL, PsycINFO, Embase, Scopus, Web of Science, and SciELO were searched for studies published in English up to June 14, 2021. Citation lists of relevant reviews and included studies were also searched for additional peer-reviewed articles. Two independent reviewers conducted critical appraisal using standardized tools from JBI, and data extraction, using a data extraction form designed by the authors. Statistical pooling of quantitative data was not possible due to heterogeneity; thus, the findings were reported narratively.Results: A total of 4163 unique studies were screened, with 11 studies ultimately included for synthesis. Five articles were randomized controlled trials, 5 articles were analytical cross-sectional studies, and 1 article was quasi-experimental. Studies reported on 4 unique eHealth educational interventions, all of which used video format and primarily targeted the postnatal period. The findings for all primary outcomes were mixed but suggested either improvements in outcomes or no impact. The certainty of evidence was determined as low or very low across primary outcomes for reasons related to imprecision, risk of bias, and indirectness.Conclusions: Although heterogeneity of findings limited quantitative synthesis of data, this review suggests that short and engaging educational videos have the potential to positively impact parents' knowledge, confidence, and desire to be involved in procedural pain management for their children. Most of the interventions presented in this review describe evidence-based information about procedural pain management strategies that are known to be effective for infant populations. Thus, it is reasonable to assume that infant pain response should be lower when parents appropriately apply the strategies. However, the findings of this review were not able to confirm this assumption. More research is needed to evaluate the impact of parent-targeted pain management education on infant pain response.

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.

Background: Nurses provide 90% of health care worldwide, yet little is known of the experiences of nurses and midwives in policy development in low- and middle-income countries (LMICs). Objective: To identify, appraise and synthesize the qualitative evidence on the experiences of nurses' and midwives' involvement in policy development LMICs. Design: A qualitative systematic review using modified Joanna Briggs Institute (JBI) methodology. Setting: Low and middle-income countries. Participants: Nurses' and midwives' involved in policy development, implementation, and/or evaluation. Methods: A systematic search was undertaken across nine databases to retrieve published studies in English between inception and April of 2021. Screening, critical appraisal, and data extraction was undertaken by two independent reviewers. Results: Ten articles met inclusion criteria. All studies were published between 2000 to 2021 from a variety of LMICs. The studies were medium to high quality (70-100% critical appraisal scores). Four major themes were identified related to policy development: 1) Marginal representation of nurses; 2) Determinants of nurses' involvement (including at the individual, organization, and systematic level); 3) Leadership as a pathway to involvement; 4) Promoting nurses' involvement. Conclusion: All studies demonstrated that nurses and nurse midwives continue to be minimally involved in policy development. Findings reveal reasons for nurses' limited involvement and strategies to foster sustained engagement of nurses in policy development in LMICs. To enhance their involvement in policy development in LMICs, change is needed at multiple levels. Systemic power relations need to be reconstructed to facilitate more collaborative interdisciplinary practices with nurses co-leading and co-developing health care policies.

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.

Purpose: To determine nurses' challenges, extent of involvement, and the impact of involvement in politics and policy making. Organizing construct: Nurses in politics and health policy making. Methods: Literature was searched in PubMed, Scopus, Google Scholar, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), OVID, and Open Grey using phrases comprising the following key words: "nurses", "policy making", "politics", "health policy", "nurses involvement in policy making/politics/health policy", "nurses challenges in policy making/politics/policy", and "impact of nursing policy making/politics/health policy"; 22 articles published from January 2000 to May 2019 were included. Findings: The major challenges included intra- and interprofessional power dynamics, marginalization of nurses in policy making, and nursing profession-specific challenges. The extent of involvement was inadequate, and nurses mainly worked as policy implementers rather than as policy developers. Those nurses who participated in policy development focused on health promotion to build healthy communities and to empower nurses and the nursing profession. Conclusions: Nurses' involvement in policy making has not improved over time. Nursing institutions and regulatory bodies should prepare and encourage nurses to work as policymakers rather than implementers and advocate for the rightful place of nurses at policy-making forums. Clinical relevance: Preparation for health system policy making starts in the clinical settings. Educational institutions and nurse leaders should adequately prepare nurses for policy making, and nurses should participate in policy making at the organization, system, and national levels.

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.

Background: Public involvement in health-care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain. Objectives: To review the peer-reviewed empirical evidence on outcomes of public involvement in health-care policy. Methods: We systematically searched PsychINFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings. Main results: Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented. Conclusions: Despite the growing body of work on public involvement in health-care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health-care policy process may be seen to be of intrinsic value.

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.