Patient And Public Involvement Research Articles

#DryByChristmas: A patient and public involvement study on women's engagement with humorous pelvic floor muscle training digital nudges on social media.

Patient and public involvement (PPI) is essential for women's health research. Little is known about how women engage with humorous social media and behavioural health messaging targeting pelvic floor muscle training (PFMT). This PPI aimed to understand how women engage with a humorous social media campaign encouraging PFMT. The study findings will influence the co-design of a digital intervention to support women's adherence to PFMT. The Guidance for Reporting Involvement of Patients and the Public Version 2 short form was used to report the study's findings. The study examined public engagement with a humorous social media campaign encouraging PFMT in women. A healthcare professional and comedian ran the campaign following the national guidelines for engagement in PFMT. Instagram analytics gave insight into the demographics of the public who engaged, how they engaged and the most popular content. The behaviour change techniques (BCTs) used in the digital nudges that generated the highest levels of engagement were analysed using the Capability Opportunity Motivation Behaviour Change Wheel. The majority (96%) of the population showing the highest levels of engagement were women aged 35-44 years and were based in the United Kingdom (77%). The Instagram account saw an increase in engagement by 12% over the 3-month campaign, with 22,032 users seeing digital nudges and 2645 engaging with the digital nudges. The preferred way of engaging was using Likes (9723). The common themes in the digital nudges that generated the highest levels of engagement were BCTs associated with the 'social influences' theoretical domain framework that targeted the core behaviour opportunity. The study findings suggest humour may improve women's engagement with online PFMT programmes; however, more rigorous research is required to better understand diverse women's experiences of humorous online PFMT nudges. Future studies may use PFMT mobile apps instead of social media to capture true user engagement and adherence to PFMT more accurately. The insights gained from the study will be taken forward to co-design a digital behavioural intervention as part of a larger study. Members of the public were involved in the co-design of a digital health intervention that will be trialled as part of a larger research study. The public was involved using the social media platform Instagram. Public engagement with a humorous social media campaign to encourage women to engage with pelvic floor exercises was captured using Instagram analytics, for example, the timing of engagement.

Importance of patient and public involvement in doctoral research involving people living with dementia.

There is increasing recognition of the need to include patients and the public in the research process. There is extensive literature about patient and public involvement (PPI) in research, but fewer articles report on PPI in doctoral research. To reflect on establishing an advisory group for a doctoral study, exploring the opportunities and challenges associated with including patients with dementia in the research process. The authors discuss the practicalities of establishing an advisory group, the challenges of being a novice researcher, long-term commitment to PPI, the overall approach to PPI and ethical considerations. Establishing an advisory group for a doctoral study can facilitate mutual learning and enhance the study's quality. Achieving high-quality PPI in health and social care research can ultimately improve its quality and relevance. An important aspect of the doctoral journey is developing knowledge and skills to facilitate PPI as part of a researcher's apprenticeship.

Children's experiences of mask-wearing: a systemic review and narrative synthesis.

Masks have been widely used as a preventative tool during the COVID-19 pandemic. However, the use of masks by children has been controversial, with international guidelines recommending a risk-based approach to national policymakers. We aimed to conduct a systematic review that explores children's experiences of mask-wearing, drawing on an evidence base that describes mask-wearing in different contexts including air pollution, and to prevent the spread of infectious disease. We searched MEDLINE, Embase and PsycINFO in June 2021, with repeat searches in August 2022 and January 2024, for primary research studies exploring children's experiences of masks. Included studies reported on participants between 4 and 14 years (inclusive), with no restrictions on language where an English translation was available. Two reviewers independently screened titles and abstracts and reviewed full texts, with discrepancies resolved by a third reviewer. We used the Mixed Methods Appraisal Tool for quality appraisal and narrative synthesis to identify key findings. We also conducted stakeholder consultation (Patient and Public Involvement (PPI)) with nine children, where they submitted annotated drawings of their preferred masks to complement our review findings. We screened 982 titles and abstracts and reviewed 94 full texts. 45 studies were included in the synthesis. Children's experiences of mask-wearing were influenced by their perceived necessity, social norms around their use and parental attitudes. Challenges related to mask-wearing were described, including difficulty reading facial expressions and physical discomfort. Children found it easier to wear masks when sitting and in cooler environments, and they benefited from unmasking during outdoor break time at school. As part of the PPI consultation, children highlighted the importance of mask design and the environmental impact of masks. Children's experiences of mask-wearing were varied and context-dependent, with several mask-design challenges raised. Future policy on mask-wearing needs to consider the context in which mask-wearing would be most beneficial, and how local adaptations to policy can respond to children's needs.

Patient and public involvement at the German Center for Mental Health: achievements and challenges

Patient and public involvement (PPI) describes the participation of patients and relatives, i.e., experts by experience (EE), in the research process. The PPI has not been widely adopted in the fields of medicine and clinical psychology in Germany and there is anotable absence of institutional support. The German Center for Mental Health (DZPG), which has been under construction since May 2023, aims to achieve nationwide and cross-center implementation of PPI, constituting one of its primary objectives. Participation of EE is to be implemented in the DZPG at all levels of decision-making. The article describes the origins, development and challenges associated with the implementation of participation structures and projects in the DZPG. The central political PPI committee in the DZPG, the Trilogue Center Council (TZR), developed acomprehensive PPI strategy for the DZPG in almost 3 years of work, before the beginning of the financial support of the DZPG. Among various measures, the strategy entails establishing afar-reaching representation for EE in all decision-making bodies of the DZPG, to involve EE as reviewers in evaluating research proposals, to integrate participatory elements into all studies of the DZGG and to foster user-initiated research endeavors. The implementation of the strategy is ensured by across-center PPI infrastructure, the Center for PPI, and scientific PPI consultants. The Center for PPI's tasks include supporting the voice of the EE and developing instruments and guidelines for participatory research, bringing together EE and researchers for joint DZPG projects as well as the documentation and quality assurance for participatory research. One of the particular challenges for the successful implementation of the PPI strategy is the limited experience with PPI in Germany in the field of mental health research and the widespread lack of structural implementation. Currently developed solution strategies include training for researchers and EE to communicate the benefits and pathways in the realization of PPI and thus enable shared decision-making and research. In addition, extensive access to knowledge and resources for EE will be created and uniform remuneration regulations for EE will be developed. APPI strategy at the DZPG has been successfully developed and is currently being implemented by the cross-center infrastructure Center for PPI.

Emotion in public involvement: A conceptual review.

Experiential knowledge can aid in designing research by highlighting what an idea looks like from a patient and carer perspective. Experiential knowledge can be emotional, and this can create challenges at formal research meetings. The aim of this study was to consider the role of emotions in public involvement. This is a conceptual review informed by relevant literature and reflection within the author team. A structured Scopus search was conducted in November 2021 and December 2022, identifying 18 articles that presented findings from patient and public involvement(PPI) research related to 'emotion'. We complemented the search with theory-generating articles related to the role of emotion and emotional labour in human life. Study findings from the structured search were tabulated to identify recurring themes; these were as follows: emotional connections to the research topic can cause stressful as well as cathartic experiences of PPI, 'emotional work' is part of PPI when people are contributing with their experiential knowledge and the emotional aspect of 'lived experience' needs to be recognised in how PPI is planned and facilitated. These points were considered in relation to theoretical works and experiences within the author team. 'Emotion work' is often required of public collaborators when they contribute to research. They are asked to contribute to research alongside researchers, with knowledge that often contains emotions or feelings. This can be both upsetting and cathartic, and the environment of the research study can make the experience worse or better. The emotional component of experiential knowledge can be challenging to those invited to share this knowledge. It is imperative that researchers, research institutions and health and care professionals adjust research meeting spaces to show an awareness of the emotional labour that is involved in PPI. This review was initiated after a meeting between carers and family members of residents in care homes and researchers. The review is co-written by a group of three researchers and three carers and family members. Regular online meetings were held during the draft stages to incorporate people's views and ideas. Data extracted from the review were presented to the group of public collaborators in a variety of formats (e.g., posters, slideshows, text and verbally) to facilitate shared sense-making and synthesis of the literature.

Transforming Integrated Care Through Co-production: A Systematic Review Using Meta-ethnography.

There is a requirement for health and care systems and services to work on an equitable basis with people who use and provide integrated care. In response, co-production has become essential in the design and transformation of services. Globally, an array of approaches have been implemented to achieve this. This unique review explores multi-context and multi-method examples of co-production in integrated care using an exceptional combination of methods. To review and synthesise evidence that examines how co-production with service users, unpaid carers and members of staff can affect the design and transformation of integrated care services. Systematic review using meta-ethnography with input from a patient and public involvement (PPI) co-production advisory group. Meta-ethnography can generate theories by interpreting patterns between studies set in different contexts. Nine academic and four grey literature databases were searched for publications between 2012-2022. Data were extracted, analysed, translated and interpreted using the seven phases of meta-ethnography and PPI. A total of 2,097 studies were identified. 10 met the inclusion criteria. Studies demonstrated a variety of integrated care provisions for diverse populations. Co-production was most successful through person-centred design, innovative planning, and collaboration. Key impacts on service transformation were structural changes, accessibility, and acceptability of service delivery. The methods applied organically drew out new interpretations, namely a novel cyclic framework for application within integrated care. Effective co-production requires a process with a well-defined focus. Implementing co-delivery, with peer support, facilitates service user involvement to be embedded at a higher level on the 'ladder of co-production'. An additional step on the ladder is proposed; a cyclic co-delivery framework. This innovative and operational development has potential to enable better-sustained person-centred integrated care services.

Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.

To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. The PPI of two YPCCsas co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCsguaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCswere involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.

Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review.

Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place. This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area. A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed. The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact. Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.

What works for whom, how and why in mental health education for undergraduate health profession students? A realist synthesis protocol

IntroductionIt has been shown that mental health education can support positive attitudes of health profession students towards people with mental health challenges, which supports them to provide optimal healthcare to...

Selecting an e-cigarette for use in smoking cessation interventions and healthcare services: findings from patient and public consultation for the COSTED trial

ObjectivesThe Cessation of Smoking Trial in the Emergency Department (COSTED) trial aims to ascertain whether brief advice, the provision of an e-cigarette starter kit and referral to stop smoking services...

Lifestyle modification interventions for adults with intellectual disabilities: systematic review and meta-analysis at intervention and component levels.

Adults with intellectual disabilities (IDs) are susceptible to multiple health risk behaviours such as alcohol consumption, smoking, low physical activity, sedentary behaviour and poor diet. Lifestyle modification interventions can prevent or reduce negative health consequences caused by these behaviours. We aim to determine the effectiveness of lifestyle modification interventions and their components in targeting health risk behaviours in adults with IDs. A systematic review and meta-analysis were conducted. Electronic databases, clinical trial registries, grey literature and citations of systematic reviews and included studies were searched in January 2021 (updated February 2022). Randomised controlled trials and non-randomised controlled trials targeting alcohol consumption, smoking, low physical activity, sedentary behaviours and poor diet in adults (aged≥18years) with ID were included. Meta-analysis was conducted at the intervention level (pairwise and network meta-analysis) and the component-level (component network meta-analysis). Studies were coded using Michie's 19-item theory coding scheme and 94-item behaviour change taxonomies. Risk of bias was assessed using the Cochrane Risk of Bias (ROB) Version 2 and Risk of Bias in Non-randomised Studies of Interventions (ROBINS-I). The study involved a patient and public involvement (PPI) group, including people with lived experience, who contributed extensively by shaping the methodology, providing valuable insights in interpreting results and organising of dissemination events. Our literature search identified 12180 articles, of which 80 studies with 4805 participants were included in the review. The complexity of lifestyle modification intervention was dismantled by identifying six core components that influenced outcomes. Interventions targeting single or multiple health risk behaviours could have a single or combination of multiple core-components. Interventions (2 RCTS; 4 non-RCTs; 228 participants) targeting alcohol consumption and smoking behaviour were effective but based on limited evidence. Similarly, interventions targeting low physical activity only (16 RCTs; 17 non-RCTs; 1413 participants) or multiple behaviours (low physical activity only, sedentary behaviours and poor diet) (17 RCTs; 24 non-RCTs; 3164 participants) yielded mixed effectiveness in outcomes. Most interventions targeting low physical activity only or multiple behaviours generated positive effects on various outcomeswhile some interventions led to no change or worsened outcomes, which could be attributed to the presence of a single core-component or a combination of similar core components in interventions. The intervention-level meta-analysis for weight management outcomes showed that none of the interventions were associated with a statistically significant change in outcomes when compared with treatment-as-usual and each other. Interventions with core-components combination of energy deficit diet, aerobic exercise and behaviour change techniques showed the highest weight loss [mean difference (MD)=-3.61, 95% credible interval (CrI) -9.68 to 1.95] and those with core-components combination dietary advice and aerobic exercise showed a weight gain (MD 0.94, 95% CrI -3.93 to 4.91). Similar findings were found with the component network meta-analysis for which additional components were identified. Most studies had a high and moderate risk of bias. Various theories and behaviour change techniques were used in intervention development and adaptation. Our systematic review is the first to comprehensively explore lifestyle modification interventions targeting a range of single and multiple health risk behaviours in adults with ID, co-produced with people with lived experience. It has practical implications for future research as it highlights the importance of mixed-methods research in understanding lifestyle modification interventions and the need for population-specific improvements in the field (e.g., tailored interventions, development of evaluation instruments or tools, use of rigorous research methodologies and comprehensive reporting frameworks). Wide dissemination of related knowledge and the involvement of PPI groups, including people with lived experience, will help future researchers design interventions that consider the unique needs, desires and abilities of people with ID.

Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research.

There are increasing calls for neurodivergent peoples' involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions - Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan. To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers). The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders. Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR. Although in its infancy, RE-STAR has demonstrated the model's potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.

Patient and public involvement in abortion research: reflections from the Shaping Abortion for Change (SACHA) Study

Patient and public involvement (PPI) is limited within abortion-related research. Possible reasons for this include concerns about engaging with a stigmatised patient group who value confidentiality and may be reluctant...

A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research

BackgroundThere are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research.MethodsPPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a “you said, we did” impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion.ResultsIn total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a “jargon buster”, an animation and an online recipe book (http://www.re-equipp.co.uk/) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research.ConclusionCollaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.

1983 Exploring barriers to recruiting older people to a white-coat hypertension study

Abstract Introduction There is a recognised association between white coat hypertension (WCH) and adverse cardiovascular outcomes in older adults. However, there is no consensus on the management of WCH in this group. The objective of the Hypertension in the Very Elderly Trial (HYVET-2) study was to assess the feasibility of randomising 100 patients >75years with WCH from General Practice in the UK to treatment or usual care. The study did not randomise any patients. In this follow up study, we sought to explore the reasons for not recruiting. Methods Using a mixed-methods study design, staff from 29 General Practice (GP) sites and the Clinical Research Network (CRN) in Kent, Surrey, and Sussex (KSS) were sent an online questionnaire about local research facilities and infrastructure, and HYVET-2 study methodology and target population demographics. Results Nineteen (19) individuals responded the questionnaires (15 primary care staff, 4 CRN staff). Using a framework approach, we identified six themes summarising challenges to HYVET-2 recruitment. These themes were: established approaches of primary care towards managing WCH in older people, target patient demographics, study design complexity, patient-facing study documents, limited research resources in primary care and identification of eligible patients using existing coding. Conclusion Our experience showed that recruiting older people to a WCH study from primary care was not feasible. A national scoping survey amongst primary care physicians in the UK, and a robust patient and public involvement (PPI) targeting older people with WCH might improve recruitment in future studies of WCH in older people.

1955 Multimodal critical discourse analysis of current representations of hearing loss in the UK news media

Abstract Introduction Hearing loss (HL) affects 12 million UK adults, including 70% of those aged over 70 years. It is associated with social isolation, anxiety, and depression. Furthermore, HL in midlife is the largest modifiable risk factor for dementia. However, many individuals delay or avoid treatment. This may be due to limited understanding of HL amongst the public, and the considerable stigma surrounding HL and hearing aids. The media play a crucial role in shaping public perceptions of age-related conditions. Therefore, this study investigated representations of HL in UK newspapers, especially representations of the relationship between HL and mental health. Method Using Nexis (a news database), 7173 newspaper articles featuring HL between May 2022-May 2023 were retrieved. Following screening, 20 articles were analysed using multimodal critical discourse analysis. This qualitative approach regards communicative choices (here, images and text) as able to both reflect and shape society, including propagating or challenging stigma. A Patient and Public Involvement (PPI) panel contributed to study design and data interpretation. Results Most articles featured young adults with HL, particularly celebrities. Whilst this could challenge the stereotype that HL only affects older adults, it could also increase the invisibility of older adults in the media. Many articles contained inspirational stories, which may help reduce the stigma of HL. However, some people with HL do not want to be portrayed differently to other people. Some articles discussed HL and mental health, especially its association with dementia, loneliness, and depression. PPI contributors indicated that newspapers should provide diverse HL representations and should help improve public awareness of this condition, especially its impact on mental health. Discussion This research has important implications for clinicians, researchers, charities, the media, and all those who communicate with the public about HL. Future research should investigate HL representations in other media, particularly social media.

‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies.

PPI in psychiatry and the problem of knowledge

This article begins by locating Patient and Public involvement ((PPI) historically and argues that ‘mental health’ was a special case. This movement held promise for service users in repositioning them as researchers as opposed to ‘subjects’. We argue, however, that ultimately it failed and was reduced to involved publics ‘tinkering at the edges’. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.

Perspectives of researchers and clinicians on patient and public involvement (PPI) in preclinical spinal cord research: An interview study.

Patient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory-based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study. Semi-structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically. Nine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab-based research and the daily experiences of living with SCI to be a barrierand proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research. While traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work. This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co-authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

Patient and public involvement (PPI) in health care: A systematic mapping review of systematic reviews

Introduction: While patient and public involvement (PPI) is increasingly required by policymakers and funding agencies, the vast amount of literature on this topic makes it difficult for stakeholders who are at the beginning of their journey to find guidance on conceptual frameworks, successful methods, and good examples for PPI in contexts/settings similar to their own. Although there are various conceptual frameworks available, especially for PPI in research [1], little is known about which conceptual frameworks are successfully being implemented in health care practice. Recently, [2] highlighted different theoretical traditions and the need to further develop theory-driven approaches to guide the process of involvement in more strategic ways. 
 Objectives: The overarching goal of this mapping review is to identify systematic reviews on PPI in health care practice worldwide to: 
 
 further examine the different conceptualizations of PPI in health care used in the literature (i.e., definitions, models, frameworks);
 provide an overview of the methods used to promote and implement PPI in health care;
 provide an overview of contextual factors such as:
 
 - the settings in which PPI is implemented in health care; 
 - the demographic characteristics of the patients and the publics involved;
 - the desired, achieved and reported outcomes of PPI; and 
 - the outcomes used to measure the effectiveness of PPI. 
 Method and preliminary results: Methodologically, a mapping review design was chosen to give an overview of findings, identify research gaps in the field and to provide the audience with intuitive and accessible visualisations. This review is co-designed and carried out in partnership with a patient (JB), who is also an active volunteer, representative and chair of a patient organization. 
 In December 2021, the study was registered on the Open Science Forum (https://osf.io/9b5j3) and an initial search on PubMed, Cinahl and PsycInfo resulted in 3763 articles after deduplication. Titles and abstracts were screened independently by 2 reviewers (VC, JB) and 95 articles were selected for full-text review. 35 articles were included in the study for detailed data extraction (VC, IB, JB). The themes covered in the articles range from PPI in the education and skills training of health care staff, PPI in design, development and evaluation of health care services and products, quality improvement, patient safety, infectious disease control, crisis management, mental health and health promotion. While data extraction has been completed, data synthesis is still ongoing at the time of abstract submission. An updated search is planned for December 2022. With this mapping review of systematic reviews, we hope to provide an overview of the field and some guidance to those wanting to involve patients, caregivers and the public in their upcoming projects. 
 References
 [1] Greenhalgh T, et al. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expectations 2019;22(4):785-801. DOI: 10.1111/hex.12888. 
 [2] Ocloo J, et al. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Research Policy and Systems 2021;19(1):8. DOI: 10.1186/s12961-020-00644-3.