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Background: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. Methods: Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio‐recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. Results: Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. Conclusions: This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. Consumer Contributions: Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper. [ABSTRACT FROM AUTHOR]

Objectives To characterise the literature on public involvement in health research published between 1995 and 2009. Methods Papers were identified from three systematic reviews, one narrative review and two bibliographies. The analysis identified journals where papers were published; countries of lead authors; types of public involved; health topic areas; and stages of research involving the public. Papers were also classified as to whether they were literature reviews or empirical studies; focused on participatory/action research; were qualitative, quantitative or mixed-method. The number of papers published per year was also examined. Findings Of the 683 papers identified, 297 were of USA origin and 223 were of UK origin. Of the 417 empirical papers: (i) participatory/action research approach was dominant, together with qualitative data collection methods; (ii) the stage of research the public was most involved was question identification; (iii) indigenous groups were most commonly involved; (iv) mental health was the most common health topic. Published studies peaked in 2006. Conclusions The present study identifies publication patterns in public involvement in health research and provides evidence to suggest that researchers increasingly are 'walking the walk' with respect to public involvement, with empirical studies consistently out-numbering literature reviews from 1998. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

Background: Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co‐producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. Methods: A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot‐testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. Results: The co‐production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. Conclusions: This study investigated the process of co‐producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot‐test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co‐production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. Public Contribution: Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co‐author. [ABSTRACT FROM AUTHOR]

Background: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS. Design: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs. Results: The contributors proposed three exemplar roles for patients in patient‐driven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice). Discussion: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change. Patient or Public Contribution: Public contributors were active partners throughout, and co‐authored the paper. [ABSTRACT FROM AUTHOR]

Background: Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim: This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion: Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Context: Participatory arts‐based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective: Using the current literature on arts‐based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results: We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in‐practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion: Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution: The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages. [ABSTRACT FROM AUTHOR]

Introduction: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. Methods: We adapted a participatory research method (the World Café) to engage one local CALD community—the Macedonian community (Our bi‐cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)—to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. Results: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision‐making. Conclusion: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. Patient or Public Contribution: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school‐based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi‐cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing. [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]

Context: Both within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to identify how participation can improve research. Objective: This paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact. Discussion: While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts. Conclusions: We argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research. [ABSTRACT FROM AUTHOR]

Background: New evidence has found breast and cervical cancer risk factors unique to African American women. Thus, there is a significant need to increase their knowledge and understanding of relevant risk factors and the potential protective benefits associated with breast‐feeding and HPV vaccination. The National Witness Project is a robust, evidence‐ and community‐based lay health advisor programme that uses group education, navigation and survivor narratives to increase cancer screening among diverse underserved women. Methods: A multi‐phase, community‐based participatory research study was conducted across three sites in Buffalo, NY, New York City and Arkansas between October 2016 and January 2017. Pre‐/post‐test surveys were administered during volunteer trainings and community programmes. An evaluation survey was also administered at the Annual Meeting for Education and Networking. Paired sample t tests were used to compare pre‐/post‐test survey scores. Results: Trainee survey results showed the overall mean per cent correct pre‐/post‐test scores were 47.7% (SD: 21.87) and 79.2% (SD: 16.14). Altogether, 31 educational programmes reached 332 community participants. Participants' breast and cervical cancer knowledge scores were significantly higher after the education programme (84.4%) than before (55.3%) with a mean change score of 29% (P ≤.001). Conclusion: This paper reveals the underlying complexities to update the educational curriculum content of a multi‐site, community‐based outreach organization. The new curriculum significantly improved African American women's knowledge about breast and cervical cancer by 10%‐36%, clearly demonstrating that this information was new to them. The need for education programming in African American communities to disseminate cancer prevention and risk information remains high. [ABSTRACT FROM AUTHOR]

Background: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health‐related quality of life (QoL) in PD. Objective: The aim of this study was to gain insights into the experience of living with the NMS of PD in real‐time using participatory action methodology. Method: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. Results: Four interrelated themes were identified. Emotional well‐being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self‐esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. Conclusion: Findings demonstrated the far‐reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person‐centred and comprehensive approaches to care. Patient or Public Contribution: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development. [ABSTRACT FROM AUTHOR]

Introduction: Public and patient involvement can provide crucial insights to optimise research by enhancing relevance and appropriateness of studies. The World Health Organization (WHO) engaged in an inclusive process to ensure that both technical experts and women had a voice in defining the research gaps and needs to increase or reintroduce the use of assisted vaginal birth (AVB) in settings where this intervention is needed but unavailable or underused. Methods: We describe the methods and outcomes of online workshops led by WHO to obtain women representatives' perspectives about AVB research gaps and needs. Results: After technical experts created a list of research questions based on various evidence syntheses, WHO organised four online workshops with 31 women's representatives from 27 mostly low‐ and middle‐income (LMIC) countries. Women rated the importance and priority of the research questions proposed by the technical experts, improving and broadening some of them, added new questions, and voiced their main concerns and views about AVB. Women helped to put the research questions into context in their communities, highlighted neglected factors/dimensions that influence practices and affect women's experience during labour and childbirth, underscored less salient consequences of AVB, and highlighted the main concerns of women about research on AVB. The consolidated vision of technical experts and women's representatives resulted in a technical brief published by WHO. The technical brief is expected to stimulate global research and action closely aligned with women's priorities. Conclusions: We describe a successful experience of engaging women, mostly from LMICs, in the identification of research gaps and needs to reintroduce AVB use. This process contributed to better aligning research questions with women's views, concerns, and priorities. Given the scarcity of reports about engaging women from LMICs to optimise research, this successful experience can serve as an inspiration for future work. Patient or Public Contribution: Women representatives were involved at every stage of the workshops described in full in this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Involving people with lived experience is fundamental to healthcare development and delivery. This is especially true for inflammatory bowel disease (IBD) services, where holistic and personalised models of care are becoming increasingly important. There is, however, a significant lack of representation of underserved and diverse groups in IBD research, and there are significant barriers to healthcare access and utilisation among minority groups in IBD. IBD centres need to be aware of these experiences to address barriers via service changes, improve interactions with local communities and promote meaningful engagement for improved health outcomes. Methods: A pragmatic community‐based approach was taken to engage with leaders and members of underserved groups across 11 workshops representing Roma, Afro‐Caribbean, people of African descent and the wider black, Asian and minority ethnic (BAME) communities, Muslim women, refugee community members, deprived areas of South Yorkshire, LGBTQ+ and deaf populations. Thematic analysis of field notes identified patterns of attention across the community groups and where improvements to services were most frequently suggested. Results: Findings demonstrated several barriers experienced to healthcare access and utilisation, including language accessibility, staff attitudes and awareness, mental health and stigma, continuity of support, and practical factors such as ease of service use and safe spaces. These barriers acted as a lever to co‐producing service changes that are responsive to the health and social care needs of these groups. Conclusions: Engaging with people from a range of communities is imperative for ensuring that service improvements in IBD are accessible and representative of individual needs and values. Patient or Public Contribution: Local community leaders and members of community groups actively participated in the co‐design and development of improvements to the IBD service for a local hospital. Their contributions further informed a pilot process for quality improvement programmes in IBD centres. [ABSTRACT FROM AUTHOR]

Background: Starting in the 1990s in the United States, individuals with lived experience of mental health crises and recovery have been employed as peer support workers (PSWs) internationally. However, the implementation of PSW in clinical contexts remains challenging. Methods: This manuscript presents and discusses the methodological framework of the ImpPeer‐Psy5 study on the PSW implementation in the German mental healthcare sector. This study used a mixed‐methods and collaborative research approach, as well as participatory research strategies. After describing the study design, populations, teamwork and assessments, the epistemic challenges of its methodological framework will be critically discussed and how it has iteratively shaped the object of study. Discussion and Practical Implications: The healthcare, policy and funding context of PSW implementation as well as the study's methodological framework have differently influenced the ways in which the implementation of PSW has been conceived in this study. The choice of a collaborative or participatory methodological framework is advised to better align research questions and procedures to the specific needs and challenges of PSWs and other stakeholders concerned with PSW implementation. Patient and Public Contribution: The research team of the ImpPeer‐Psy5 study was collaboratively staffed by a portion of researchers who also identify as users or survivors of psychiatric services. A nonprofit organization for the training of PSWs served as a practice partner throughout the research process. Different participatory formats involve a significant number of diverse stakeholders relevant to PSW implementation. [ABSTRACT FROM AUTHOR]

Background: Despite the availability of effective evidence‐based treatments for depression and anxiety, many ‘harder‐to‐reach’ social and patient groups experience difficulties accessing treatment. We developed a complex intervention, the AMP (Improving Access to Mental Health in Primary Care) programme, which combined community engagement (CE), tailored (individual and group) psychosocial interventions and primary care involvement. Objectives: To develop and evaluate a model for community engagement component of the complex intervention. This paper focuses on the development of relationships between stakeholders, their engagement with the issue of access to mental health and with the programme through the CE model. Design: Our evaluation draws on process data, qualitative interviews and focus groups, brought together through framework analysis to evaluate the issues and challenges encountered. Setting & participants: A case study of the South Asian community project carried out in Longsight in Greater Manchester, United Kingdom. Key findings: Complex problems require multiple local stakeholders to work in concert. Assets based approaches implicitly make demands on scarce time and resources. Community development approaches have many benefits, but perceptions of open‐ended investment are a barrier. The time‐limited nature of a CE intervention provides an impetus to ‘do it now’, allowing stakeholders to negotiate their investment over time and accommodating their wider commitments. Both tangible outcomes and recognition of process benefits were vital in maintaining involvement. Conclusions: CE interventions can play a key role in improving accessibility and acceptability by engaging patients, the public and practitioners in research and in the local service ecology. [ABSTRACT FROM AUTHOR]

Background: Children are amongst the most susceptible groups to environmental exposures, for both immediate and life‐course health outcomes. Despite their increased susceptibility, children's knowledge, experiences and voices are understudied. A deeper understanding of children's environmental health perceptions has the potential to better inform policy, develop targeted interventions and improve public health outcomes. Methods: In this study, our community–academic partnership used the Photovoice research method to examine how urban children from low‐income communities perceive environmental influences on their health. Twenty children, ages 10–12, took photographs and participated in focus group interviews regarding their perspectives on how the environment influences their health. Results: Qualitative analyses revealed five major thematic categories: environmental exposures, environmental health sentiments, environmental health outcomes, interest in environmental health and environmental health solutions. We used the findings to develop an environmental health perspective theoretical framework that can inform future work designed to promote the environmental health and well‐being of children from low‐income communities in urban communities. Conclusion: Photovoice enabled children from low‐income communities to capture and communicate their environmental health perceptions. These findings have the potential to inform and identify potential targets and opportunities for environmental health interventions and promotion in their communities. Patient or Public Contribution: Partnerships with community‐based organizations were central to the present study. By design, these community‐based partners were involved in the conduct and procedures of the study. [ABSTRACT FROM AUTHOR]

Introduction: Numerous frameworks for defining and supporting co‐created research exist. The practicalities of designing and conducting co‐created research are clearly important, yet the utility of these frameworks and their operationalisation within local contexts and involving a diversity of stakeholders and interests are currently not well‐researched. Methods: Using an instrumental case study approach, we examined the utility of a published systematic framework designed to improve clarity about co‐creation as a concept and approach. The framework is explored based on the first two processes that correspond to our own work to date: co‐ideation and co‐design. Results: Our study showed that diverse stakeholders bring challenges regarding research priorities, methods, language and the distribution of power within co‐creation processes. Co‐creation activities were incremental, adaptable, responsive and made best use of established relationships, structures and collective leadership to meet the competing demands of funders and human research ethics committees, while ensuring the meaningful participation of multiple stakeholders. Conclusion: The findings highlight the iterative, fluid and deeply relational nature of co‐created research. Rather than seeking to categorise these processes, we argue that the social relations of research production that provide the structures within which all co‐created knowledge is generated are more important drivers of effective knowledge mobilisation and implementation. Thus, close attention to these social relations is needed in co‐created research. Patient or Public Contribution: People with lived experience of emotional distress and/or suicidal crisis, including academic researchers, service and peer workers, carers and advocates were involved in the co‐ideation and co‐design of this research. All authors identify as people with lived experience, from both academic and nonresearch backgrounds. [ABSTRACT FROM AUTHOR]

Background The material practices which researchers use in research partnerships may enable or constrain the nature of engagement with stakeholder groups. Participatory learning and action ( PLA) research approaches show promise, but there has been no detailed analysis of stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis. Objectives To explore stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis. Design The EU RESTORE implementation science project employed a participatory approach to investigate and support the implementation of guidelines and training initiatives ( GTIs) to enhance communication in cross-cultural primary care consultations. We developed a purposeful sample of 78 stakeholders (migrants, general practice staff, community interpreters, service providers, service planners) from primary care settings in Austria, England, Greece, Ireland and The Netherlands. We used speed evaluations and participatory evaluations to explore their experiences of two PLA techniques-Commentary Charts and Direct Ranking-which were intended to generate data for co-analysis by stakeholders about the GTIs under analysis. We evaluated 16 RESTORE researchers' experiences using interviews. We conducted thematic and content analysis of all evaluation data. Results PLA Commentary Charts and Direct Ranking techniques, with their visual, verbal and tangible nature and inherent analytical capabilities, were found to be powerful tools for involving stakeholders in a collaborative analysis of GTIs. Stakeholders had few negative experiences and numerous multifaceted positive experiences of meaningful engagement, which resonated with researchers' accounts. Conclusion PLA techniques and approaches are valuable as material practices in health research partnerships. [ABSTRACT FROM AUTHOR]

Introduction: There is growing evidence to support the use of co‐design in developing interventions across many disciplines. This scoping review aims to examine how co‐design methodology has been used in the development of cardiovascular disease (CVD) secondary prevention interventions within health and community settings. Methods: We searched four academic databases for studies that used the co‐design approach to develop their intervention. Studies were included if consumers (adults with CVD) and key stakeholders (e.g. clinicians, service providers) were involved in the co‐design process. The review focused on methodology rather than traditional study outcomes; therefore, co‐design processes and activities were extracted and evaluated against a selected co‐design framework. Results: Twenty‐two studies were included in this review. Studies were implemented across various settings with consumers and stakeholder groups most frequently consisting of patients and healthcare professionals, respectively. Most studies specifically stated that they used a 'co‐design' approach (n = 10); others used terms such as participatory action research (n = 3), user‐centred design (n = 3) and community‐based participatory research (n = 2). Although there was variability in terminology, co‐design processes, and participants, all studies adhered to the key principles of consumer engagement. Predominant co‐design activities included semistructured interviews, focus groups, co‐design/development workshops and advisory group meetings. Intervention effectiveness was assessed in eight studies showing mixed results. Conclusions: This review provides an overview of how the co‐design approach has previously been used in the development of CVD secondary prevention interventions. These findings provide methodological considerations that can guide researchers and healthcare services when implementing co‐design to develop feasible and acceptable interventions that can improve outcomes for CVD populations. Patient or Public Contribution: No patients, service users, caregivers, people with lived experience or members of the public were involved in this scoping review. This review article was written by academics who have undertaken a significant amount of co‐design work with consumers and stakeholders. [ABSTRACT FROM AUTHOR]

Background: Research and clinical outcomes that matter to people with lived experience can significantly differ from those outcomes studied by researchers. To inform a future Cochrane review of suicide and self‐harm prevention interventions, we aimed to work with young people with relevant lived experience to agree on priority outcomes. Design: Four participatory codesign workshops were completed across two sites (New Zealand, United Kingdom) with 28 young people in total. We iteratively adapted the methods over the course of the study. Results: 'Improved coping' and 'safer/more accepting environment to disclose' were the final top‐rated outcomes. 'Reduction of self‐harm' was considered a low priority as it could be misleading, stigmatizing and was considered a secondary consequence of other improvements. In contrast to typical research outcomes, young people emphasized the diversity of experience, the dynamic nature of improvement and holistic and asset‐based framing. Methodologically, dialogue using design materials (personas) to thematically explore outcomes was effective in overcoming the initial challenge of disparate quantitative ratings. Discussion: The results will directly inform the development of a Cochrane review, enabling identification of whether and how outcomes of most importance to young people are measured in trials. Rather than producing discrete measurable outcomes that could be easily added to the systematic review, the young people challenged the academic conceptualization of outcomes, with implications for future evidence synthesis and intervention research, and for future codesign. Patient or Public Contribution: Young people with lived experience were codesigners of the outcomes, and their feedback informed iterative changes to the study methods. [ABSTRACT FROM AUTHOR]

Introduction: The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient‐reported outcome (PRO) comparator tool. Methods: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive‐content analysis. Results: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision‐making and side‐effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision‐making and side‐effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. Conclusions: Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health‐seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population‐based sample. Patient or Public Contribution: This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Background: Disclosure of human immunodeficiency virus (HIV)‐positive status in a workplace can be a complex social decision for a person living with HIV. Objective: To design a Decision Guide to support people living with HIV in assessing contexts, risks and benefits of workplace disclosure in choosing whether or not, or to what extent, to disclose. In this report, we review the participatory design of a Decision Guide prototype and focus on its evaluation. Methods: We began with stakeholder input through an environmental scan and community consultation that informed the development of an online Decision Guide prototype. To evaluate the comprehensiveness, acceptability and usability of the prototype, we used qualitative methodology involving individual interviews and the think‐aloud technique. Interviews were transcribed and analysed qualitatively. Results: Fourteen people, including people living with HIV and service providers, participated. We identified benefits of the Decision Guide related to comprehensiveness, acceptability and usability. Additional interview themes focused on disclosure concerns, mitigating risks associated with disclosure and additional considerations for the Decision Guide. Conclusions: The Decision Guide was perceived to be acceptable, comprehensive and useful. The findings endorse the application of a socio‐ecological perspective when designing decision support aids for complex social decisions. Patient or public contribution: People with lived experience of HIV were involved in the prototype design phases as research team members. They, along with community leaders and service providers, also participated in a community forum and were key informants for the evaluation of the Workplace Disclosure Decision Guide prototype. [ABSTRACT FROM AUTHOR]

Background: Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed. Objective: The aim of this study was to describe how user participation manifests itself within a co‐design process involving patients, significant others and health‐care professionals, including potential enablers or barriers. Methods: This study was conducted in the context of a co‐design process of a new person‐centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi‐structured interviews and questionnaires. Results: Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever‐adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute. Discussion/Conclusion: Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co‐design processes should allow for varying levels of participation among the participants and throughout the process. Patient or public contribution: Patients, significant others and health‐care professionals participated as co‐designers of a care transition model between hospital and home. [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]

Background: Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision‐making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning. Methods: A consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi‐phase participatory process, including analysis of its application in 24 cases. Results: The framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision‐making contextual factors. Case study findings show a wide variation in use of metrics. There is no 'one size fits all' set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations. Conclusion: Introducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed. Patient contribution: Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript. [ABSTRACT FROM AUTHOR]

Background: In implementation science, vast gaps exist between theoretical and practical knowledge. These gaps prevail in the process of getting from problem analysis to selecting implementation strategies while engaging stakeholders including care users. Objective: To describe a process of how to get from problem analysis to strategy selection, how to engage stakeholders, and to provide insights into stakeholders' experiences. Design: A qualitative descriptive design. Setting and participants: The setting was a care organization providing long‐term care to people with acquired brain injuries who are communication vulnerable. Fourteen stakeholders (care users, professionals and researchers) participated. Data were collected by a document review, five interviews and one focus group. Inductive content analysis and deductive framework analysis were applied. Intervention: Stakeholder engagement. Main outcome measures: A three‐step process model and stakeholders experiences. Results and conclusion: We formulated a three‐step process: (a) reaching consensus and prioritizing barriers; (b) categorizing the prioritized barriers and idealization; and (c) composing strategies. Two subthemes continuously played a role in how stakeholders were engaged during the process: communication supportive strategies and continuous contact. The experiences of stakeholder participation resulted in the following themes: stakeholders and their roles, use of co‐creation methods and communication supportive strategies, building relationships, stimulus of stakeholders to engage, sharing power, empowerment of stakeholders, feeling a shared responsibility and learning from one another. We conclude that the inclusion of communication‐vulnerable care users is possible if meetings are prepared, communication‐friendly presentations and reports are used, and relationship building is prioritized. [ABSTRACT FROM AUTHOR]

Background: Public involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health‐care programmes and health‐related modules in the UK, there is also a requirement by professional bodies to include "service user" involvement in preparation for entry to a professional health‐care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers. Objectives: A unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples' knowledge, skills and confidence for their involvement in the health faculty. Design: PPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills. Results: The workshops were well attended, and outcomes indicated the importance of co‐production when designing, delivering and evaluating programmes. Discussion: Co‐production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors. Recommendations: Co‐production was seen as integral to this research to ensure that outcomes were indeed "fit for purpose". [ABSTRACT FROM AUTHOR]

Background: Priority‐setting is a way to focus research and knowledge translation (KT) efforts for community‐based research partnerships (CBRP). Objective: To identify the developmental coordination disorder (DCD) research and KT priorities of stakeholders in Quebec, Canada, and their perceptions regarding the implementation of a CBRP. Design: An advisory committee oversaw the research process including an online survey and four community forums. Setting and participants: The survey was posted online and four community forums were organized. Participants included parents of children with DCD, adults with DCD, health professionals and school staff. Main variables: Stakeholder generated research and KT priorities, and optimal CBPR conditions. Outcome measures: Participants selected their top five priorities based on a predefined list of 16 research and 12 KT priorities determined in collaboration with the advisory committee. They also rated the importance of various CBRP conditions. Preliminary survey results were discussed during the forums. Results: Survey participants (n = 395) identified interwoven research and KT priorities where access to services was considered to be essential: supporting children at school; improving DCD identification and diagnosis; preventing secondary consequences; improving the organization of services and implementing effective services. Forum participants (n = 52) confirmed the relevance of these priorities and supported the establishment of a CBRP inclusive of all stakeholders to improve DCD services, research and KT. Discussion and conclusions: A general consensus emerged among all groups, but adults with DCD were more concerned with employment than were the other stakeholder groups. These findings are presently being used to shape an ongoing, online CBRP. [ABSTRACT FROM AUTHOR]

The article reports that Great Britain National Institute for Health Research will explore exploring how coproduced research might work in practice in health and social care research in England. It states that key principle involved in coproducing research is the sharing of power in key decisions. It mentions that co-produced research challenges power structures and the way in which research is currently funded and governed.

The article discusses a study which aimed to describe how the community-based participatory interventions are further adapted to run partially or fully online in response to COVID-19 pandemic. Topics covered include the lessons that can be learned from two examples of these interventions that catalyze social change and improve health outcomes, and how these interventions have accelerated digital innovation in the delivery of health services.

Background: Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK, effective services designed to build resilience for people in long‐term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals. Objective: With positive behaviour support (PBS) and mindfulness and acceptance and commitment therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long‐term caring roles. Design: The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued. Findings: Mindfulness/ACT can change long‐standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR. Discussion: The use of PHR accessed knowledges that would have been lost to more traditional, professional‐expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re‐consideration of quality issues in relation to PHR and participation. [ABSTRACT FROM AUTHOR]

Background: A growing literature explores the coproduction of research knowledge. Barriers to coproduction in mental health research have been identified, especially for the people from marginalized communities. There is an established body of participatory research that has potential to inform coproduction in mental health research. Objectives: To explore and articulate how learning from community participatory approaches to research enable barriers to knowledge coproduction to be overcome in mental health research. Setting: An evaluation of a primary care mental health service, led by an experienced survivor researcher, supported by a health service researcher and involving a team of community co‐researchers. Design: Cycles of reflective writing (first‐person narrative) by the authors, and feedback from the co‐researcher team, on their experiences of undertaking the evaluation were used to explore the ways in which community actors, including those from marginalized communities, might be meaningfully involved in producing research knowledge about mental health services. Results: A space was created where community co‐researchers, including those from traditionally marginalized communities, felt safe and empowered to move beyond essentialized "service user" identities and bring a range of skills and expertise to the evaluation. There was meaningful rebalancing of power between traditional university and community roles, although the issues around leadership remained complex and more could be done to explore how our different experiences of race and mental health shape the research we do. Conclusions: Potential was demonstrated for participatory research approaches to inform coproduction of knowledge in mental health research that fully reflects the diversity of identity and experience. [ABSTRACT FROM AUTHOR]

Introduction: Reimbursement decisions on orphan drugs carry significant uncertainty, and as the amount increases, so does the risk of making a wrong decision, where harms outweigh benefits. Consequently, patients often face limited access to orphan drugs. Managed access programmes (MAPs) are a mechanism for managing risk while enabling access to potentially beneficial drugs. Patients and their caregivers have expressed support for these programmes and see patient input as critical to successful implementation. However, they have yet to be systematically involved in their design. Objective: The aim of this study was to co‐design with patients and caregivers a tool for the development of managed access programmes. Methods: Building upon established relationships with the Canadian Organization for Rare Disorders, the project team collaborated with patients and caregivers using the principles of participatory action research. Data were collected at two workshops and analysed using a thematic network approach. Results: Patients and caregivers co‐designed a checklist comprised of six aspects of an ideal MAP relating to accountability (programme goals); governance (MAP‐specific committee oversight, patient input, international collaboration); and evidence collection (outcome measures and continuation criteria, on‐going monitoring and registries). They recognized that health‐care resources are finite and considered disease or drug eligibility criteria for deciding when to use a MAP (eg drugs treating diseases for which there are no other legitimate alternatives). Conclusions: A patient and caregiver‐designed checklist was created, which emphasized patient involvement and transparency. Further research is needed to examine the feasibility of this checklist and roles for other stakeholders. [ABSTRACT FROM AUTHOR]

Abstract: Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick‐off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor‐made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers. [ABSTRACT FROM AUTHOR]

Abstract: Background: A significant challenge in Patient and Public Involvement and Engagement (PPIE) in health research is to include a wide range of opinions and experiences, including from those who repeatedly find themselves at the margins of society. Objective: To contribute to the debate around PPIE by introducing a bottom‐up methodology: cultural animation (CA). Cultural Animation is an arts‐based methodology of knowledge co‐production and community engagement which employs a variety of creative and participatory exercises to help build trusting relationships between diverse participants (expert and non‐experts) and democratize the process of research. Design: Three CA full‐day workshops for the research project “A Picture of Health.” Participants: Each workshop was attended by 20‐25 participants including 4 academics, 5 retired health professionals who volunteered in the local community and 15 community members. Participants ranged in age from 25 to 75 years, and 80% of the participants were women over the age of 60. Results: The CA workshops unearthed a diversity of hidden assets, increased human connectivity, led to rethinking of and co‐creating new health indicators and enabled participants to think of community health in a positive way and to consider what can be developed. Discussion: Cultural animation encourages participants to imagine and create ideal pictures of health by experimenting with new ways of working together. Conclusion: We conclude by highlighting the main advantages to PPIE as follows: CA provides a route to co‐produce research agendas, empowers the public to engage actively with health professionals and make a positive contribution to their community. [ABSTRACT FROM AUTHOR]

Background The importance of patient participation and involvement is now widely acknowledged; in the past, few systematic health-care institution policies existed to establish sustainable co-operation. In 2004, in Germany, the initiative 'Self-Help Friendliness ( SHF) and Patient-Centeredness in Health Care' was launched to establish and implement quality criteria related to collaboration with patient groups. Objectives The objective of this study was to describe (i) how patients were involved in the development of SHF by summarizing a number of studies and (ii) a new survey on the importance and feasibility of SHF. Setting and participants In a series of participative studies, SHF was shaped, tested and implemented in 40 health-care institutions in Germany. Representatives from 157 self-help groups ( SHGs), 50 self-help organizations and 17 self-help clearing houses were actively involved. The second objective was reached through a survey of 74 of the 115 member associations of the biggest self-help umbrella organization at federal level (response rate: 64 %). Results Patient involvement included the following: identification of the needs and wishes of SHGs regarding co-operation, their involvement in the definition of quality criteria of co-operation, having a crucial role during the implementation of SHF and accrediting health-care institutions as self-help friendly. The ten criteria in total were positively valued and perceived as moderately practicable. Conclusions Through the intensive involvement of self-help representatives, it was feasible to develop SHF as a systematic approach to closer collaboration of professionals and SHGs. Some challenges have to be taken into account involving patients and the limitations of our empirical study. [ABSTRACT FROM AUTHOR]