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Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]

Background: Community‐based health interventions have been implemented as a key strategy for achieving improved health outcomes in Ghana. Effectiveness, however, largely depends on the successful implementation of patient–public engagement (PPE). Although several PPE studies have been conducted in Ghana, little research has been done to understand the specific role of PPE in the context of implementing community‐based health programmes. This paper, therefore, examines the extent of PPE implementation in three selected community‐based health programmes (Community‐based Health Planning and Service [CHPS], Community‐based Maternal and Child Health and Buruli Ulcer) to understand their specific effects on health outcomes. Methods: Three focus groups, involving 26 participants, were held in three districts of the Ashanti region of Ghana. Participants were mainly health service users involving community health committee members/volunteers, residents and health professionals. They were invited to participate based on their roles in the design and implementation of the programmes. Participants focused on each of Rifkin's spider‐gram components. Data were transcribed and analysed descriptively using NVIVO 12 Plus. Results: PPE implementation was found to be extensive across the three programmes in specific areas such as organisation and resource mobilisation. PPE was more restricted in relation to community needs assessment, leadership and management, particularly for the CHPS and Buruli Ulcer programmes. Conclusion: Findings suggest that benefits from community‐based health interventions are likely to be greater if PPE can be widely implemented across all dimensions of the spider‐gram framework. [ABSTRACT FROM AUTHOR]

Introduction: The COVID‐19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. Methods: Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID‐19 pandemic. Results: The COVID‐19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID‐19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift. Conclusions: This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID‐19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners. Patient Contribution: Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

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

Based on the theory of change, we gather, organize, and synthesize the evidence on the impact of three language of instruction (LOI) choices (teaching in mother tongue [MT] with later transition, teaching in a non‐MT language, or teaching in two or more languages at one time) on literacy and biliteracy outcomes. We focus on quantitative and qualitative studies of LOI interventions in low‐ and middle‐income countries (LMICs) and consider languages that are commonly spoken in the developing world. As such, we include studies that examine transfers from local languages to English, but not those evaluating transfers from local languages to languages that are less spoken in LMICs (e.g., Swedish). [ABSTRACT FROM AUTHOR]

Background: A new diagnosis of complex post‐traumatic stress disorder, CPTSD, has been agreed by the World Health Organization, WHO, and evidence is needed for what psychological treatment might be effective, particularly from those with experience of the disorder. We used a novel participatory approach to explore patient views and simultaneously studied the impact on the patient researchers of the research process itself. In this paper, we report on the latter section of the study how the involvement in research of patients with CPTSD affected their mental health. Symptoms of CPTSD may include emotional dysregulation, feelings of self‐worthlessness and difficulties in relationships. Objective: The aim of this study section was to explore whether patients' mental health could be promoted through empowering them to participate in research on CPTSD. Design: The study had a qualitative, participatory design. The clinician who led the research (first author) held group meetings with patient researchers to explore the impact of the research process. The clinician also kept notes on the process in a reflective log. Setting and participants: Six patient researchers participated in research with other patients with lived experience of CPTSD in an NHS outpatient unit in a London hospital. Intervention studied: The research process itself was analysed in group meetings with researchers which the clinician recorded and transcribed. Findings: Participation in research may promote increased self‐confidence and social inclusion for those with CPTSD. Conclusion: Involvement in research may be seen as an empowering intervention because patients felt it contributed to recovery. [ABSTRACT FROM AUTHOR]

Background: Based on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance. Objective: This article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used. Search strategy: Three electronic databases were searched on 22 May 2018. The search was not limited to any time period or language. Inclusion criteria: The included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem. Data extraction and synthesis: The 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme. Main results: The priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are 'Treatment', 'Patients' and 'Health condition'. The distribution of the research priorities varied depending on the health conditions and prioritization methods. Discussion and conclusions: This review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research. [ABSTRACT FROM AUTHOR]

Background: Patient ‐ centred care has been advocated as a key component of high ‐ quality patient care, yet its meanings and related actions have been difficult to ascertain. Objective: To map the use of different terms related to the process of giving patients a starring role in their own care and clarify the possible boundaries between terms that are often mixed. Methods: A literature search was conducted using different electronic databases. All records containing the search terms ‘patient engagement’, ‘patient activation’, ‘patient empowerment’, ‘patient involvement’, ‘patient adherence’, ‘patient compliance’ and ‘patient participation’ were collected. Identified literature was then analysed using the Statistical Package for Social Science (SPSS). The number of yearly publications, most productive countries, cross ‐ concepts articles and various scientific fields dealing with the multidisciplinary concepts were identified. Results: Overall, 58 987 papers were analysed. Correspondence analysis revealed three temporal trends. The first period (2002–2004) focused on compliance and adherence, the second period (2006–2009) focused on the relationship between participation and involvement, and the third one (2010–2013) emphasized empowerment. Patient activation and patient engagement followed the temporal development trend connected to the ‘immediate future’. Discussion and conclusions: The bibliometric trend suggests that the role of patient in the health ‐ care system is changing. In the last years, the patient was viewed as a passive receptor of medical prescription. To date, the need to consider patients as active partners of health ‐ care planning and delivery is growing. In particular, the term patient engagement appears promising, not only for its increasing growth of interest in the scholarly debate, but also because it offers a broader and better systemic conceptualization of the patients’ role in the fruition of health care. To build a shared vocabulary of terms and concepts related to the active role of patients in the health ‐ care process may be envisaged as the first operative step towards a concrete innovation of health ‐ care organizations and systems. [ABSTRACT FROM AUTHOR]

Background: Value chain interventions have become widespread throughout the international development sector over the last 20 years, and there is a need to evaluate their effectiveness in improving women's welfare across multiple dimensions. Agricultural value chains are influenced by socio‐cultural norms and gender dynamics that have an impact on the distribution of resources, benefits, and access to opportunities. While women play a critical role in agriculture, they are generally confined to the least‐valued parts of the value chain with the lowest economic returns, depending on the local, social and institutional contexts. Objectives: The review assesses the effectiveness of approaches, strategies and interventions focused on women's engagement in agricultural value chains that lead to women's economic empowerment in low‐ and middle‐income countries. It explores the contextual barriers and facilitators that determine women's participation in value chains and ultimately impact their effectiveness. Search Methods: We searched completed and on‐going studies from Scopus, Web of Science Core Collection (Social Sciences Citation Index [SSCI], Science Citation Index Expanded [SCI‐EXPANDED], Conference Proceedings Citation Index – Science [CPCI‐S], Conference Proceedings Citation Index – Social Science & Humanities [CPCI‐SSH], and Emerging Sources Citation Index [ESCI]), International Bibliography of the Social Sciences, EconLit, Business Source Premier, APA PsycInfo, Cochrane Central Register of Controlled Trials, Cochrane, Database of Systematic Reviews, CAB Abstracts and Sociological Abstracts. We also searched relevant websites such as Consortium of International Agricultural Research Centers (CGIAR); the International Fund for Agricultural Development (IFAD); AgriProFocus; the Bill & Melinda Gates Foundation (BMGF); Donor Committee for Enterprise Development; the UN Food and Agriculture Organisation (FAO); the International Labour Organisation (ILO); the Netherlands Development Organisation; USAID; the Swiss Agency for Development and Cooperation; the International Food Policy Research Institute; World Agroforestry; the International Livestock Research Institute; the Foreign, Commonwealth & Development Office; the British Library for Development Studies (BLDS); AGRIS; the IMMANA grant database; the 3ie impact evaluation database; Innovations for Poverty Action (IPA); The Abdul Latif Jameel Poverty Action Lab (J‐PAL); the World Bank IEG evaluations; the USAID Development Data Library; Experience Clearinghouse; the proceedings of the Agriculture, Nutrition and Health Academy conference; the proceedings of the Centre for the Study of African Economies (CSAE) Conference; the proceedings of the North East Universities Development Consortium (NEUDC) Conference; and the World Bank Economic Review. The database search was conducted in March 2022, and the website search was completed in August 2022. Selection Criteria: The review includes value chain interventions evaluating the economic empowerment outcomes. The review includes effectiveness studies (experimental and non‐experimental studies with a comparison group) and process evaluations. Data Collection and Analysis: Two review authors independently assessed studies for inclusion, extracted data, critically appraised the studies, and synthesised findings. Results: We found that value chain interventions are successful in improving the economic conditions of their intended beneficiaries. The interventions were found to improve women's economic outcomes such as income, assets holdings, productivity, and savings, but these effects were small in size and limited by low confidence in methodological quality. The meta‐analysis suggests that this occurs more via the acquisition of skills and improved inputs, rather than through improvement in access to profitable markets. The qualitative evidence on interventions points to the persistence of cultural barriers and other constraints. Those interventions implemented in Sub‐Saharan Africa and South Asia are consistently more successful for all outcomes considered, although there are few studies conducted in other areas of the world. Conclusions: The review concludes that value chain interventions empower women, but perhaps to a lesser extent than expected. Economic empowerment does not immediately translate into empowerment within families and communities. Interventions should either moderate their expectations of empowerment goals, or they should be implemented in a way that ensures higher rates of participation among women and the acquisition of greater decision‐making power. [ABSTRACT FROM AUTHOR]

Introduction: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence‐informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. Methods: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty‐eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. Results: Thirty‐eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. Conclusion: This research developed a previously unavailable set of evidence‐informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. Patient and Public Involvement Statement: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co‐authors. [ABSTRACT FROM AUTHOR]

Background: Longitudinal cohort studies gather large amounts of data over time, often without direct benefit to participants. A positive experience may encourage retention in the study, and participants may benefit in unanticipated ways. Objective: To explore first‐time mothers' experiences of taking part in a longitudinal cohort study and completing self‐administered surveys during pregnancy and at 3, 6, 9 and 12 months' postpartum. Design: Content analysis of comments written by participants in the Maternal health And Maternal Morbidity in Ireland study's five self‐completion surveys, a multisite cohort study exploring women's health and health problems during and after pregnancy. This paper focuses on what women wrote about taking part in the research. Ethical approval was granted by the site hospitals and university. Setting and participants: A total of 2174 women were recruited from two maternity hospitals in Ireland between 2012 and 2015. Findings: A total of 1000 comments were made in the five surveys. Antenatally, barriers related to surveys being long and questions being intimate. Postpartum, barriers related to being busy with life as first‐time mothers. Benefits gained included gaining access to information, taking time to reflect, stopping to think and being prompted to seek help. Survey questions alone were described as valuable sources of information. Discussion and conclusions: Findings suggest that survey research can "give back" to women by being a source of information and a trigger to seek professional help, even while asking sensitive questions. Understanding this can help researchers construct surveys to maximize benefits, real and potential, for participants. [ABSTRACT FROM AUTHOR]

Context The National Institute for Health and Care Excellence ( NICE) has an explicit mandate to include patient and public involvement in the appraisal of medicines to be available for funding on the NHS. NICE involves an appraisal committee who are required to take on board experiential evidence from patient experts alongside population-based evidence on clinical and cost-effectiveness when making a decision whether to fund a drug. Objective This paper considers how NICE Single Technological Appraisal ( STA) committees attempt to incorporate the views of patients in making decisions about funding medicines on the NHS. Methods A prospective design was employed to follow three pharmaceutical products involving three different appraisal committees. Three data collection methods were used: analysis of documentary evidence sent by NICE, non-participant unstructured observations of the open and closed sessions of meetings and qualitative interviews. Settings and participants Unstructured non-participant observations were carried out at nine STA meetings, and 41 semi-structured interviews were undertaken with committee members from NICE's STA committees, patient experts, analysts from NICE's project team and drug manufacturers. Results Our analysis showed how the committees displayed a preference for an ideal-type of patient representative, disagreement among the committee when weighing-up patient statements in the STA process and more pre-preparation support for patient involvement. Conclusions Although NICE has attempted to adopt an approach flexible to patients and carers through formal decision-making arrangements that incorporate patient views, nonetheless, the processes of the STAs can in fact undermine the very evidence collected from patient representatives. [ABSTRACT FROM AUTHOR]

Background: High rates of youth re‐offending indicate that young custody‐leavers face challenges when reintegrating into their communities. Aftercare and resettlement programs can occur pre‐, during, and post‐release and generally provide multiple forms of support services to address youths' transitional needs. Objectives: The present review examines (1) the impact of youth aftercare/resettlement programs on crime‐related outcomes, (2) how treatment effect is moderated by participant, program, and study characteristics, (3) whether some types of interventions are more effective than others, (4) barriers/facilitators to effective program implementation, (5) the theory of change underlying resettlement interventions, and (6) available research on intervention cost. Search Methods: A comprehensive set of keywords and synonyms was combined in a Boolean search across 26 electronic databases. Multiple gray literature sources were also searched, including 23 journals, 4 meeting archives, 11 organization websites, 3 open access journal websites, and the CVs of 8 well‐known researchers in the field. The search was completed in January 2023. Selection Criteria: For objectives 1–3, studies were included if they utilized a randomized controlled design or quasi‐experimental comparison group design in which participants were matched on at least some baseline variables and included at least one quantitative individual‐measure of crime. For objective 4, included studies presented process evaluations of aftercare/reentry programs, clearly stated their research goals, and used qualitative methods in an appropriate way to answer the stated research question. For objectives 5 and 6, no specific methods were required; any study meeting the criteria for objectives 1–4 which presented findings on theory of change or cost data were included. For all outcomes, only studies conducted in a westernized country, and published after 1991 in English, French, or German were considered. Data Collection and Analysis: Two coders conducted primary data extraction for the included studies. Data were entered into a Microsoft Excel database. After data extraction, the two coders validated the coding by cross‐checking the database with each research report. Discrepancies between coders were discussed until consensus was reached. Where consensus could not be reached, a third coder was consulted. Study risk of bias was addressed using the ROBINS‐I (Sterne et al., 2016), ROB‐2 (Higgins et al., 2019), and the critical appraisal skills programme (CASP, 2018). Objectives 1–3 were addressed by synthesizing quantitative outcomes from rigorous impact evaluations of aftercare interventions using random effects models and meta‐regression. Thematic and narrative analysis was conducted to address objectives 4–6. Results: The search resulted in 15 impact studies, representing 4,718 participants across 21 program sites, and 35 effect sizes. The 21 impact evaluations were rated as having either low/moderate bias (k = 11) or serious bias (k = 10). The synthesis of 15 impact studies found no significant effects for arrest (k = 14; OR = 1.044, 95% prediction interval [0.527, 2.075], t = 0.335) or incarceration (k = 8, OR = 0.806, 95% prediction interval [2.203, 1.433], t = −1.674). A significant pooled effect was found for conviction (k = 13, OR = 1.209, 95% prediction interval [1.000, 1.462], t = 2.256), but results were highly sensitive to the inclusion of specific studies. No meaningful pattern of results emerged in moderator analyses with respect to study, sample, program component, or program delivery characteristics. The 19 process studies were rated as either high quality (k = 12) or moderate quality (k = 7). Thematic synthesis of the process evaluations revealed 15 themes related to the strengths/challenges of program implementation. The assessment of program cost (k = 7) determined a lack of data within the literature, preventing any summative analysis. Authors' Conclusions: Current evidence is promising with respect to conviction outcomes but overall does not find that aftercare/resettlement interventions have a reliably positive impact on crime‐related outcomes for young people who have offended. High variability across outcomes and reported data resulted in small sample sizes per outcome and limited moderator analyses. Multiple challenges for program implementation exist; additional rigorous research is sorely needed to further investigate the nuances of the program effects. [ABSTRACT FROM AUTHOR]

Objective The importance of involving patients in reporting on safety is increasingly recognized. Whilst studies have identified barriers to clinician incident reporting, few have explored barriers and facilitators to patient reporting of safety experiences. This paper explores patient perspectives on providing feedback on safety experiences. Design/Participants Patients (n=28) were invited to take part in semi-structured interviews when given a survey about their experiences of safety following hospital discharge. Transcripts were thematically analysed using NVivo10. Setting Patients were recruited from four hospitals in the UK. Results Three themes were identified as barriers and facilitators to patient involvement in providing feedback on their safety experiences. The first, cognitive-cultural, found that whilst safety was a priority for most, some felt the term was not relevant to them because safety was the 'default' position, and/or because safety could not be disentangled from the overall experience of care. The structural-procedural theme indicated that reporting was facilitated when patients saw the process as straightforward, but that disinclination or perceived inability to provide feedback was a barrier. Finally, learning and change illustrated that perception of the impact of feedback could facilitate or inhibit reporting. Conclusions When collecting patient feedback on experiences of safety, it is important to consider what may help or hinder this process, beyond the process alone. We present a staged model of prerequisite barriers and facilitators and hypothesize that each stage needs to be achieved for patients to provide feedback on safety experiences. Implications for collecting meaningful data on patients' safety experiences are considered. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Introduction: There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post‐PPI) activities were planned. Methods: We conducted a qualitative study using in‐depth interviews to identify and gain an in‐depth understanding of the impact of involving CYP in developing PRAs. The transcripts were uploaded to Atlas.ti to be coded and organised. Dutch‐language interviews were analysed and interpreted together with vocational education and training (VET) students. These students were aged between 14 and 18 years and were training to become nurses. Results: Three CYP and 15 researchers decided to participate. We focused on three categories of impact: agenda‐setting impact, individual impact and academic impact. Involving CYP creates a more enriched and clarified agenda. It ensured that both CYP and researchers underwent personal or professional growth and development, it created a connection between the people involved, awareness about the importance of involving CYP and it ensured that the people involved had a positive experience. The participants were unable to indicate the academic impact of their PRAs, but they did understand the key factors for creating it. In addition, the need to measure impact was highlighted, with a particular focus on assessing individual impact. Discussion: Our study outlines the diverse subthemes of impact that arise from involving CYP in developing PRAs. Despite the potential of research agendas to amplify CYP voices, only a minority of researchers strategized post‐PPI activities ensuring impactful outcomes, prompting the need for thorough evaluation of various impact forms and consistent alignment with the overarching goal of transforming the research field. Patient or Public Contribution: We involved VET students in the data analysis and interpretation phase by forming a young person advisory group. The data analysis of the interviews analysed by the VET students revealed four distinct themes: 1. Learnt new knowledge. 2. Learnt to collaborate. 3. Learnt to listen. 4. Assessment of the individual impact. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision‐making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. Results: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self‐awareness; (5) consideration skills; (6) self‐efficacy; (7) emotional distress; and (8) experienced time. We developed the 20‐item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire. [ABSTRACT FROM AUTHOR]

Background: In July 2022, self‐collection became universally available as part of Australia's National Cervical Screening Program. This change aims to address screening inequities experienced among underscreened populations, including women of Indian descent. This study explored experiences of cervical screening, alongside the acceptability of self‐collection, among women of Indian descent living in Victoria, Australia. We also aimed to articulate the informational needs to promote self‐collection among this population. Methods: Five focus group discussions with 39 women living in Victoria were conducted in English (n = 3) and Punjabi (n = 2). Transcripts were thematically analysed, as informed by the Theoretical Framework of Acceptability. Results: Women were motivated by the choice to self‐collect, perceiving the ability to maintain modesty and greater autonomy as key enablers. Healthcare practitioners were seen as central in supporting patient‐centred models of care. Perceived barriers to self‐collection included concerns around its accuracy and women's confidence in collecting their own sample. Widespread dissemination of culturally tailored promotion strategies communicating concepts such as 'privacy' and 'accuracy' were suggested by women to promote self‐collection. Conclusion: Self‐collection was highly acceptable among women of Indian descent, particularly when assured of its accuracy, and sociocultural norms and previous screening experiences are considered. This study highlights the huge potential that self‐collection can play in increasing equity in Australia's cervical screening programme. Patient or Public Contribution: Members of the public were involved in focus group discussions. Findings were summarised and disseminated via a poster. A bicultural worker was involved in all stages of the research. [ABSTRACT FROM AUTHOR]

Background: Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self‐management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting. Objective: To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care. Methods: We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding. Results: We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a 'biomedical' approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation. Discussion and Conclusions: Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task. Patient or Public Contribution: This study is part of a research project associated with the research network 'forges: User‐oriented care: Promotion of health in the context of chronic diseases and care dependency'. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated. [ABSTRACT FROM AUTHOR]

Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a "build your own framework" co‐design workshop. Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks. [ABSTRACT FROM AUTHOR]

Objective This paper examines staff views about legitimacy of different roles for community representatives sitting on health service committees as part of a formal Community Participation Program (CPP) in an Area Health Service (AHS) in Australia. Design A cross-sectional survey using a self-completed questionnaire by staff on committees with community representation in the AHS in 2008. Setting The study site has a population of approximately 1.4 million and covers 6000 km2. The population is ethnically and socio-economically diverse. Results There are generally positive staff attitudes at this AHS for community participation as part of the CPP with positive impacts identified, including on service delivery and the conduct of health service meetings. Most saw community representatives having legitimate roles in representing the community, improving communication between the health service and the community and providing constructive feedback. However, staff expectations about the community's role on committees do not match the reality they say they observe and less than half the staff thought the community and health service agree on the role of community representatives. Conclusions As well as reviewing and enhancing training and support for representatives and staff as part of the CPP, there is a need to question staff expectations about community members who sit on health service committees and whether these expectations are shared by other key stakeholders, most notably the community representatives themselves. These expectations have implications for the CPP and for similar programs designed to engage community members on committees and working groups with health professionals. [ABSTRACT FROM AUTHOR]

Background: There is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research. Methods: A scoping review of three databases and thematic analysis were conducted. Sixty‐one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included. Results: Key topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed. Conclusion: Engaging PWLE—from consultation to co‐creation throughout the research cycle—is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science. Patient or Public Contribution: PWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write‐up phase. [ABSTRACT FROM AUTHOR]

Introduction: Maternity services underwent much change during the COVID‐19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID‐19 pandemic on those experiences and perceptions of care. Methods: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first‐trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi‐structured interviews, virtually all due to COVID‐19 restrictions, between June 2020 and February 2021. These were audio‐recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. Results: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first—'Disconnected'—describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in‐person care was highlighted. Conclusion: Our analysis provides rich insights into the significant impacts that the COVID‐19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. Patient or Public Contribution: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co‐authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes. [ABSTRACT FROM AUTHOR]

Background: Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. Objectives: The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. Methods: Within an exploratory sequential mixed‐method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. Results: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. Conclusion: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long‐term, effective collaboration and added value for practice and research. Patient or Public Contribution: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text. [ABSTRACT FROM AUTHOR]

Introduction: Certain sociodemographic characteristics (e.g., older age) have previously been identified as barriers to patients' participation preference in shared decision‐making (SDM). We aim to demonstrate that this relationship is mediated by the perceived power imbalance that manifests itself in patients' negative attitudes and beliefs about their role in decision‐making. Methods: We recruited a large sample (N = 434) of outpatients with a range of urological diagnoses (42.2% urooncological). Before the medical consultation at a university hospital, patients completed the Patients' Attitudes and Beliefs Scale and the Autonomy Preference Index. We evaluated attitudes as a mediator between sociodemographic factors and participation preference in a path model. Results: We replicated associations between relevant sociodemographic factors and participation preference. Importantly, attitudes and beliefs about one's own role as a patient mediated this relationship. The mediation path model explained a substantial proportion of the variance in participation preference (27.8%). Participation preferences and attitudes did not differ for oncological and nononcological patients. Conclusion: Patients' attitudes and beliefs about their role determine whether they are willing to participate in medical decision‐making. Thus, inviting patients to participate in SDM should encompass an assessment of their attitudes and beliefs. Importantly, negative attitudes may be accessible to change. Unlike stable sociodemographic characteristics, such values are promising targets for interventions to foster more active participation in SDM. Patient or Public Contribution: This study was part of a larger project on implementing SDM in urological practice. Several stakeholders were involved in the design, planning and conduction of this study, for example, three authors are practising urologists, and three are psychologists with experience in patient care. In addition, the survey was piloted with patients, and their feedback was integrated into the questionnaire. The data presented in this study is based on patients' responses. Results may help to empower our patients. [ABSTRACT FROM AUTHOR]

Introduction: The Covid‐19 restrictions of 2020–2021 are known to have undermined the UK population's mental health. Working alongside staff, peer trainers and students at Recovery in Mind (RiM), a Recovery College (RC) in West Berkshire, England, this mixed‐methods study is amongst the first to investigate how an RC has responded to the pandemic. Methods: Working in co‐production with RiM staff and peer‐trainers, this study employed a mixed‐methods design, gathering Warwick‐Edinburgh Mental Wellbeing Scale (WEMWBS) well‐being outcome measures by questionnaire and student experience, learning and co‐production by interviews. Findings: This research found that RiM continued to produce demonstrable improvements in student mental health. Students welcomed the way that RiM adapted to offering online and socially distanced provisions. Students valued the skills that RiM taught and the way that RiM courses reinforced prior learning; above this, however, they valued the mutual support and sense of community that participation provided. Conclusion: This study underlines the value of RCs maintaining 'hidden curriculums' of peer support and community involvement. This research emphasizes co‐production as not only a tool for empowerment or service improvement but as a valuable skill for personal mental health recovery. Even when operating under the most unforeseen or challenging of conditions, RCs should always endeavour to prioritize and maintain co‐production. Patient or Public Contribution: In accordance with the RC ethos, this was an entirely co‐produced study, with academic researchers and RiM staff and peer trainers working democratically in partnership with one another to design and manage the study and to write up and disseminate findings. To ensure the independence and rigour of findings, data analysis was undertaken by external academic researchers. [ABSTRACT FROM AUTHOR]

Background: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self‐help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self‐help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. Methods: A cross‐sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self‐Help and the federal associations of cancer self‐help. Results: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. Conclusions: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. Patient or Public Contribution: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self‐help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants. [ABSTRACT FROM AUTHOR]

Introduction: When handover is conducted at the patient's bedside, active patient participation can be encouraged, which may improve the safety and quality of care. There is a need for valid and reliable tools to measure patient perceptions of participation in bedside handover, to ensure the rising number of implementation and improvement efforts are consistently and effectively evaluated. The aim of this study is to systematically develop and evaluate the psychometric properties of a self‐report survey to measure patients' perceptions of participation in bedside handover. Methods: In Phase 1, our team developed a conceptual framework and item pool (n = 130). In Phase 2, content validity was assessed with four health consumers, four nurses and four researchers. Next, 10 current hospital inpatients tested the survey for end‐user satisfaction. In Phase 3, 326 inpatients completed the survey, allowing exploratory factor analysis, reliability analyses and convergent/divergent validity analyses to occur. Results: Phase 1 and 2 resulted in a 42‐item survey. In Phase 3, 321 surveys were available for analysis. Exploratory factor analysis revealed a three‐factor solution, with 24 items, which matched our conceptual framework. The three factors were: 'Conditions for patient participation in bedside handover', 'Level of patient participation in bedside handover' and 'Evaluation of patient participation in bedside handover'. There was strong evidence for factor reliability and validity. Additionally, the correlation between factors was strong. Conclusion: This study furthers our conceptual understanding by showing that nurse facilitating behaviours are a strong precursor for patient participation and perceived handover outcomes, justifying the need for nursing training. A robust survey has been developed to measure patient perceptions of participation in bedside handover, which can effectively evaluate this approach to care. Engaging consumers and nurses as research team members was invaluable in ensuring that the survey is acceptable for end‐users. Patient or Public Contribution: A health consumer and nurse partnered as members of the research team from study inception to dissemination. [ABSTRACT FROM AUTHOR]

Introduction: Remote home monitoring models were implemented during the COVID‐19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID‐19. Methods: A rapid mixed‐methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross‐sectional survey and semi‐structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. Results: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self‐escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. Conclusion: Remote home monitoring models place responsibility on patients to self‐manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. Patient or Public Contribution: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly. [ABSTRACT FROM AUTHOR]

Background: Reflections on the response to the COVID‐19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. Methods: In‐depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self‐identified consumer leaders, who worked together in a COVID‐19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. Results: The pause in consumer engagement to support health service decision‐making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer‐led research and guidelines on pandemic‐related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. Conclusion: The response to the COVID‐19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self‐organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. Patient or Public Contribution: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations. [ABSTRACT FROM AUTHOR]

Introduction: Improving health services integration through primary health care (PHC) teams for patients with chronic conditions is essential to address their complex health needs and facilitate better health outcomes. The objective of this study was to explore if and how patients, family members, and caregivers were engaged or wanted to be engaged in developing, implementing and evaluating health policies related to PHC teams. This patient‐oriented research was carried out in three provinces across Canada: British Columbia, Alberta and Ontario. Methods: A total of 29 semi‐structured interviews with patients were conducted across the three provinces and data were analysed using thematic analysis. Results: Three key themes were identified: motivation for policy engagement, experiences with policy engagement and barriers to engagement in policy. The majority of participants in the study wanted to be engaged in policy processes and advocate for integrated care through PHC teams. Barriers to patient engagement in policy, such as lack of opportunities for engagement, power imbalances, tokenism, lack of accessibility of engagement opportunities and experiences of racism and discrimination were also identified. Conclusion: This study increases the understanding of patient, family member, and caregiver engagement in policy related to PHC team integration and the barriers that currently exist in this engagement process. This information can be used to guide decision‐makers on how to improve the delivery of integrated health services through PHC teams and enhance patient, family member, and caregiver engagement in PHC policy. Patient or Public Contribution: We would like to acknowledge the contributions of our patient partners, Brenda Jagroop and Judy Birdsell, who assisted with developing and pilot testing the interview guide. Judy Birdsell also assisted with the preparation of this manuscript. This study also engaged patients, family members, and caregivers to share their experiences with engagement in PHC policy. [ABSTRACT FROM AUTHOR]

Background: Patient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation. Objectives: This study aimed to develop a mobile application for health consumers' participation and evaluate the effect of the mobile application on improving health consumers' participation in patient safety. Methods: A quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey. Results: The intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p <.001), self‐efficacy of participation (p =.001), willingness to participate (p =.010) and experience of participation (p =.038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety. Conclusions: This study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers' health‐related behaviours. Patient or Public Contribution: Patients were involved during the programme development and evaluation. [ABSTRACT FROM AUTHOR]

Background: Patients are increasingly expected to take an active role in their own care. Participation in nursing documentation can support patients to take this active role since it provides opportunities to express care needs and preferences. Yet, patient participation in electronic nursing documentation is not self‐evident. Objective: To explore how home‐care patients perceive their participation in electronic nursing documentation. Methods: Semi‐structured interviews were conducted with 21 home‐care patients. Interview transcripts were analysed in an iterative process based on the principles of reflexive inductive thematic analysis. Results: We identified a typology with four patient types: 'high need, high ability', 'high need, low ability', 'low need, high ability' and 'low need, low ability'. Several patients felt a need for participation because of their personal interest in health information. Others did not feel such a need since they trusted nurses to document the information that is important. Patients' ability to participate increased when they could read the documentation and when nurses helped them by talking about the documentation. Barriers to patients' ability to participate were having no electronic devices or lacking digital skills, a lack of support from nurses and the poor usability of electronic patient portals. Conclusion: Patient participation in electronic nursing documentation varies between patients since home‐care patients differ in their need and ability to participate. Nurses should tailor their encouragement of patient participation to individual patients' needs and abilities. Furthermore, they should be aware of their own role and help patients to participate in the documentation. Patient or Public Contribution: Home‐care patients were involved in the interviews. [ABSTRACT FROM AUTHOR]

Introduction: This study pertains to the design of a decision aid (DA) to shed light on information and support needs in colorectal cancer screening, with the aim to explore the calling patterns to the Screening of Swedish Colons (SCREESCO) study's helpline. Methods: A cross‐sectional study was conducted with data from documented telephone calls to the SCREESCO study, including individuals, 59–60 years, randomized to colonoscopy or high sensitive faecal immunochemical test (FIT). Results: More than 2000 calls (women 58.5%; colonoscopy 59%) were analysed. Calling patterns: unsubscribing from screening, confirmation of participation, logistical concerns about the screening procedure, counselling, and FIT screening difficulties or in need of a new FIT test. Comorbidity was the most frequent reason for unsubscribing and most of the counselling calls included questions about the FIT test or the colonoscopy. Conclusion: Most of the calls to the helpline seemed to be related to individuals' lack of understanding about the organization of the screening programme and the screening procedure. Therefore, we find it important to further stress the tailoring part in our DA developing process, that is, provide limited information initially, with the possibility of access to more, if desired by the individual, still with respect to the individual's needs, health and digital literacy. Patient and Public Contribution: Individuals representing the public and invited to SCREESCO participated since we analysed their calls to the helpline. The findings will contribute to our continued work with the DA where the public will contribute and participate. [ABSTRACT FROM AUTHOR]

Background: Young people need to be heard and take an active role in developing welfare services. When they are recognized as having skills and expertize, the advantages young people's involvement brings to both themselves and the organizations, are mobilization and empowering with impact on national decision‐making. Objective: To synthesize existing literature on how young people's involvement in coproduction can contribute to better welfare services. Search Strategy: We performed a systematic literature search in four databases (MEDLINE, EMBASE, PsycINFO and Cinahl). Inclusion Criteria: Publications whose abstracts contained themes as: Young people 12–25 years of age, receiving welfare, youth coproduction/involvement/participation and qualitative studies. Data Extraction and Synthesis: Of the 5469 documents retrieved, the full text of 58 studies was read, of which seven studies met the inclusion criteria. A thematic synthesis following Thomas and Harden was used. Main Results: Young people being involved in coproduction of developing welfare services experienced to be valued and supported by partnerships, but they also pointed out deficiencies in welfare services. Some of the adolescents expressed not being listened to, lack of trusted relations and not being involved in policy making or prospects. The staff members saw some challenges with partnering with youth; as the need for flexibility, to keep the youth engaged and to purposefully meet the adolescents where they need help, guidance or resources. Conclusions: More involvement should be stressed. Coproduction is often symbolic more than resulting in real changes in the welfare services. Consequently, what is crucial when young people are involved is that they are encouraged by adults to be clear about the degree of involvement they want. Patient or Public Contribution: Patient and public involvement was not explicit in this review. [ABSTRACT FROM AUTHOR]

Introduction: HIV pre‐exposure prophylaxis (PrEP) involves the use of antiretroviral medication in HIV‐negative individuals considered to be at risk of acquiring HIV. It has been shown to prevent HIV and has been available in Wales since July 2017. Measuring and understanding adherence to PrEP is complex as it relies on the simultaneous understanding of both PrEP use and sexual activity. We aimed to understand the experiences of men who have sex with men (MSM) living in Wales initiating, implementing and persisting with HIV PrEP. Methods: We conducted semistructured interviews with MSM PrEP users in Wales who participated in a cohort study of PrEP use and sexual behaviour. Following completion of the cohort study, participants were invited to take part in a semistructured interview about their experiences of taking PrEP. We aimed to include both individuals who had persisted with and discontinued PrEP during the study. The interview topic guide was informed by the ABC taxonomy for medication adherence and the theory of planned behaviour. We analysed our data using reflexive thematic analysis. Results: Twenty‐one participants were interviewed, five having discontinued PrEP during the cohort study. The developed themes focused on triggers for initiating PrEP, habitual behaviour, drivers for discontinuation and engagement with sexual health services. Stigma surrounding both PrEP and HIV permeated most topics, acting as a driver for initiating PrEP, an opportunity to reduce discrimination against people living with HIV, but also a concern around the perception of PrEP users. Conclusion: This is the first study to investigate PrEP‐taking experiences incorporating established medication adherence taxonomy. We highlight key experiences regarding the initiation, implementation and persistence with PrEP and describe how taking PrEP may promote positive engagement with sexual health services. These findings may be useful for informing PrEP rollout programmes and need to be explored in other key populations. Patient and Public Contribution: PrEP users, in addition to PrEP providers and representatives of HIV advocacy and policy, were involved in developing the topic guide for this study. [ABSTRACT FROM AUTHOR]

Aim: The use of gameful design for supporting health‐related behaviours has been one of the major trends in health technology. An opportunity to increase engagement and motivation in a given health behaviour and the possibility of reaching improved outcomes through continued or consistent behaviour could be provided by gamification. This study aimed to identify gamification opportunities for digital patient journey solutions to increase patients' engagement and motivation for health‐related behaviour during an arthroplasty journey. Design: A secondary analysis. Method: Semistructured interviews were performed among 20 elective primary total hip and knee arthroplasty patients in a single joint‐replacement centre in Finland during autumn 2018. NVivo software was used for deductive content analysis. The study was conducted among 20 patients in a single joint replacement centre during 2018. Results: Several opportunities for gamification were identified for digital patient journey solutions, which could be used in advanced care to increase patients' engagement and motivation for health‐related behaviour during the arthroplasty journey. These opportunities were identified related to five dimensions: accomplishment, challenge, guided, playfulness and social experience. Clear, scheduled, progressive and personalized goals with an activity tracking, real‐time timespan visualization and social networking with peers, support networks and healthcare providers could be provided. Opportunities for competition and immersion were not identified. [ABSTRACT FROM AUTHOR]

Background: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing. Objective: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information. Methods: In this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register. Results: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. Conclusion: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels. Patient or Public Contribution: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups. [ABSTRACT FROM AUTHOR]

Introduction: Previous research has used proxy variables or a unique construct to quantify healthcare access. However, there is a need for a different model that can handle this multivariable problem. This study seeks to develop a way to measure access to the local healthcare system with higher local resolution. Methods: A new survey was developed based on communitarian claims, following a behavioural model and an ontological framework. The survey was used to identify local barriers to healthcare services and the local preferences for priority settings. The results were analysed using multiattribute utility functions and individual weights were assigned by a panel of experts. National and regional indexes of access to healthcare were developed. Results: The survey contained seven modules and 104 questions. It was conducted on 1885 participants at 42 rural and 231 urban locations in three regions of Chile. The total disutility of the identified barriers to healthcare access at the national level was low (0.1448; values ranged between 0 and 1, with 1 representing a higher barrier) and was higher in the northern region (0.1467). The barriers associated with the health‐policy component showed the highest disutility value, and specific barriers for each community were identified. Conclusions: These results have the potential to improve health decision‐making in Chile and can be used to assess the impacts of new health policy reforms. Although this model was tested in Chile, it can be adapted for use in any other country. Patient or Public Contribution: Participants contributed to this study by completing a survey, participating in general talks and receiving brochures with the results obtained from this study. [ABSTRACT FROM AUTHOR]

Background: Involving patients and citizens in health care decision‐making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment. Objective: This study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels. Methods: A questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models. Results: The response rate was 5.7% (n = 217). At all decision‐making levels, joint decision‐making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision‐making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p =.019). Discussion: Participants wanted to be equally involved in decision‐making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill—factors associated with increased participation preferences in the literature. Conclusion: Contrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed. [ABSTRACT FROM AUTHOR]

Background: Shared decision making (SDM) is appreciated as a promising model of communication between clinicians and patients. However, in acute mental health settings, its implementation is still unsatisfactory. Objective: The aim of this study is to examine barriers and facilitators of SDM with acutely ill inpatients with schizophrenia. Design: A qualitative interview study was performed. Setting and Participants: The analysis is based on interviews with participants (patients and staff members) of the intervention group of the randomised‐controlled SDMPLUS trial that demonstrated a significant improvement of SDM measures for patients with schizophrenia on acute psychiatric wards. Main Variables Studied: Interviews addressed treatment decisions made during the current inpatient stay. The interviews were analysed using qualitative content analysis. Results: A total of 40 interviews were analysed and 131 treatment decisions were identified. According to the interviewees, SDM had taken place in 29% of the decisions, whereas 59% of the decisions were made without SDM. In 16%, a clear judgement could not be made. Barriers and facilitators of SDM were categorised into patient factors, clinician factors, setting factors and others. Clinicians mostly reported patient factors (e.g., symptoms) as barriers towards SDM, which were not mirrored on the patients' side. Facilitators included patient as well as clinician behaviour during consultations. Conclusion: Even in the context of a successful SDM intervention, the implementation of SDM for patients in the very acute stages of schizophrenia is often not possible. However, strong facilitators for SDM have also been identified, which should be used for further implementation of SDM. Patient or Public Contribution: During the development of the study protocol, meetings with user representatives were held. [ABSTRACT FROM AUTHOR]

Background: While increasingly discussed in somatic care, the concept of patient participation remains unsettled in psychiatric care, potentially impeding person‐centred experiences. Objective: To describe outpatient psychiatric care patients' conceptualization of patient participation. Design: An exploratory survey. Setting and participants: Patients in four psychiatric outpatient care units. Variables: Patients conceptualized patient participation by completing a semi‐structured questionnaire, including optional attributes and free text. Data were analysed using statistics for ordinal data and content analysis for free text. Results: In total, 137 patients (69% of potential respondents) completed the questionnaire. The discrete items were favoured for conceptualizing patient participation, indicating a primary connotation that participation means being listened to, being in a reciprocal dialogue, learning about one's health care and managing one's symptoms. Additional free‐text responses acknowledged the attributes previously recognized, and provided supplementary notions, including that patient participation is about mutual respect and shared trust. Discussion: What patient participation is and how it can be facilitated needs to be agreed in order to enable preference‐based patient participation. Patients in outpatient psychiatric care conceptualize participation in terms of both sharing of and sharing in, including taking part in joint and solo activities, such as a reciprocal dialogue and managing symptoms by yourself. Conclusion: While being a patient in psychiatric care has been associated with a lack of voice, an increased understanding of patient participation enables person‐centred care, with the benefits of collaboration, co‐production and enhanced quality of care. Patient contribution: Patients provided their conceptualization of patient participation in accordance with their lived experience. [ABSTRACT FROM AUTHOR]

Background: Patient representatives (PRs) have been involved for decades in health‐care development, and their participation is increasingly sought in health‐care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse. Objective: To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement. Design: Qualitative design using semi‐structured interviews analysed by content analysis. Setting and participants: Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden. Results: Most participants considered the PR role important but mentioned several problems. PRs' contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present. Conclusion: This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. Patient or public contribution: PRs were information givers in data collection. [ABSTRACT FROM AUTHOR]

Context: Partnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective: To co‐construct a tool for measuring the degree of partnership between patients and HCPs. Design: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. Results: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. Conclusions: The CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings. Patient or Public Contribution: Patients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article. [ABSTRACT FROM AUTHOR]

Background: Patient‐centredness has been targeted by the Italian government as a key theme for the future development of health services. Objective: Measuring patient‐centred health services in partnership with citizens, health professionals and decision makers. Design: National participatory survey in a large test set of hospitals at national level. Setting and participants: A total of 387 hospital visits conducted in 16 Italian regions by over 1,500 citizens and health professionals during 2017‐2018. Main variables and outcome measures: An ad hoc checklist was used to assess person‐centredness in hospital care through 243 items, grouped in 4 main areas, 12 sub‐areas and 29 person‐centred criteria (scored 0‐10). GEE linear multivariate regression was used to explore the relation between hospital characteristics and person‐centredness. Results: Person‐centred scores were moderately high, with substantial variation overall (median score: 7.0, range: 3.2‐9.5) and by area (Care Processes: 6.8, 2.0‐9.8; Access: 7.4, 2.7‐9.7; Transparency: 6.7, 3.4‐9.5 and Relationship: 7.3, 0.8‐10.0). Multivariate regression found higher scores for increasing volumes of activity (quartile increase: +0.21; 95% CI: 0.13, 0.29) and lower scores in the south and islands (−1.03; −1.62,‐0.45). Discussion: The checklist has been applied successfully by over 1,500 collaborators who assessed hospitals in 16 distinct Regions and Autonomous Provinces of Italy. Despite an overall positive mark, all scores were highly variable by location and hospital characteristics. Conclusion and patient or public contribution: A national participatory programme to improve patient‐centredness in Italian hospitals highlighted critical areas with the direct input of citizens. [ABSTRACT FROM AUTHOR]

Background: Patient engagement (PE) in health‐care planning and improvement is a growing practice. We lack evidence‐based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals. Methods: This study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis. Results: Participants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health‐care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs. Conclusion: This research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On‐going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches. Patient or public contribution: Three patient research partners with hospital PE experience informed study objectives and interview questions. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is increasingly required in mental health services research. To empower patients to actively address depression, the GET.FEEDBACK.GP study evaluates a patient‐targeted feedback intervention after depression screening using the Patient Health Questionnaire (PHQ‐9). Objective: To refine the patient‐targeted feedback from a previous study within a participatory research team (PRT) by conducting workshops to investigate patients' needs and preferences for feedback. To evaluate the process and outcome of PPI. Design: Patient and public involvement was carried out on the levels of collaboration and consultation. A PRT of patient partners and researchers planned and conducted three workshops with patients. Patients' needs were investigated using a focus group. Participants prioritized needs, discussed feedback drafts and evaluated two drafts using cognitive debriefings. Researchers of the PRT communicated the results at project level. PPI was evaluated using the Public and Patient Engagement Evaluation Tools (PPEET). Setting and Participants: A purposeful sampling of N = 12 patients with experiences of depression participated in at least one workshop. Results: Relevant content‐related needs about feedback (eg no distinction between severe and moderate symptoms), recommendations for action and patient‐relevant information were considered. Needs for comprehensible, valuing, nonstigmatizing language and design elements (eg dimensional bar) were implemented. Workshops and PRT were positively evaluated. Discussion and Conclusions: Patient and public involvement influenced the content, wording and design of the feedback. Strengths include two levels of PPI, methodical diversity and purposeful sampling. Limitations include the lack of inclusion of patients who are unaware of their depression. The evaluated PPI concept can be useful for future studies. [ABSTRACT FROM AUTHOR]

Objective: In contrast to research agendas being predominantly set by scientists or funders, a collaborative approach was used to spot future goals for research on obsessive‐compulsive disorder. Methods: First, we conducted a meta‐review and then compared the results of two online surveys with OCD professionals and patients on research priorities. The literature search was performed in three comprehensive databases, and ten research goals were extracted. Sixty‐four patients and eight professionals responded to open questions on their five most important goals. Then, they ranked the ten aims extracted from the literature on a 6‐point Likert scale. Results: For patients and professionals, research on treatment gains that persist long‐term was most important. Concerning the top five goals listed in an open format, for patients, development and maintenance of the disease was as important as psychotherapy and its efficacy. In contrast, for professionals, the efficacy and the optimization of psychotherapy were the far most important research goals. Conclusions: We proposed one possibility to involve patients in OCD research, and the multitude of answers presents a wealth of research ideas. Practice Implications: Since consistent research involvement may contribute to its clinical impact, researchers are now invited to translate our findings into empirical studies. [ABSTRACT FROM AUTHOR]

Background: The holistic evolution of patient engagement in medicines development requires a more detailed understanding of the needs of all involved stakeholders, and one that better accounts for the specific needs of some potentially vulnerable patient populations and key stages in medicines development. Objective: The purpose of this convergent mixed‐methods study was to better understand the needs of different stakeholders concerning patient engagement at three key stages in medicines development: research priority setting, clinical trial design and early dialogues with Health Technology Assessment bodies and regulators. Design: This study brought together findings from three sources: i) an online questionnaire, ii) face‐to‐face consultations with two potentially vulnerable patient populations, a workshop with Health Technology Assessment bodies, and iii) three‐step modified Delphi methodology. Results: Overall stakeholders still need additional varied support mechanisms to undertake, sustain or measure value of patient engagement. Health Technology Assessment bodies need better rationale for patient engagement in early dialogue and tools to support its implementation. Improved awareness and understanding of the need and value that involving patients, who are often considered as potentially vulnerable, can bring is needed, as is better accommodation of their specific needs. Similarly, weighted Delphi categories were as follows: aims and objectives, and sustainability. Several additional themes were common across the three key stages in medicines development. Conclusion: This broad‐reaching study provides the blocks needed to build a framework for patient engagement in medicines development. Patient or Public Contribution: Patients were involved in review and interpretation of data. [ABSTRACT FROM AUTHOR]