Patient And Public Involvement Research Articles

"There's no us vs. them, it's just us": a creative approach to centring lived experience within the AVATAR2 trial.

This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers. During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo.

Patient and public involvement in the design of an international clinical trial: real world experience

BackgroundThe value of patient and public involvement (PPI) during the earliest stages of clinical trial development, and prior to the award of substantive funding, is widely recognised. However, it is often under-resourced and PPI processes during this phase are rarely reported in detail. Having benefitted from seed funding to develop an international clinical trial proposal, we sought to describe and appraise PPI activities and processes that support pre-award co-development.MethodsA 12-month “accelerator” award facilitated development of a substantive funding application to deliver the Rheumatoid Arthritis Prevention PlatfORm Trial (RAPPORT), conceived to prioritise preventative interventions for people at risk of RA. PPI partners, including individuals at risk of rheumatoid arthritis (RA), RA patients, relatives and members of the public, provided feedback on key trial design issues through online meetings, a feedback form and emails. PPI processes employed during the one-year accelerator project were thereafter evaluated by PPI partners using an anonymous online feedback form with reference to National Institute of Health and Care Research (NIHR) UK standards for public involvement in research.ResultsSixteen out of the 25-strong PPI partner panel completed an online feedback form (64%). Respondents perceived PPI processes positively in relation to all NIHR standard domains. Several key facilitators and challenges were identified, including the need for adequate PPI funding during pre-award phases of research, strategies for creating an inclusive environment, flexibility around levels of involvement, and challenges in achieving representatively diverse participation, and the importance of communicating transparent processes for role-assignment and time-reimbursement.ConclusionsIn general, RAPPORT was considered an example of PPI well done, and in line with UK standards for public involvement in research. Facilitators and challenges of relevance for the development of future translational and clinical trial funding applications are highlighted.

Evaluating public and patient involvement in interventional research-A newly developed checklist (EPPIIC).

Public and patient involvement (PPI) has been identified as an increasingly desired and, often, required component of trial methodology-leading to higher quality, more accessible and relevant clinical research, alongside increased recruitment, funding success and insight into research impact. However, despite the great variety of frameworks and checklists available for assessing PPI, most are limited with respect to important features (e.g. applicable in specific contexts only, fail to clarify what should be assessed and reported, lack the necessary comprehensiveness or are biased in favour of researcher reporting). Thus, the current research aimed to address such limitations through the development of a new checklist, the EPPIIC, through review, thematic analysis and 'meta-evaluation' in conjunction with PPI engagement. Upon completion of the EPPIIC, three thematic 'sub-scales' emerged: (1) Policy & Practice, (2) Participatory Culture and (3) Influence & Impact. All findings are presented and discussed in light of theory and research. Notably, findings recommend EPPIIC as a useful means of assessing PPI in future trials.

Codesigning a Digital Type 2 Diabetes Risk Communication Tool in Singapore: Qualitative Participatory Action Research Approach.

Diabetes is a serious public health concern worldwide. Despite public health efforts encouraging early screening and improving knowledge of effective interventions for those at increased risk of type 2 diabetes (T2D), the incorporation of preventative behaviors into an individual's daily life remains suboptimal. Successfully and accurately increasing risk perception has been demonstrated to increase behavioral intention. The study aims to codesign a T2D risk communication tool by engaging public participants to (1) identify key characteristics that contribute to an effective risk communication tool and (2) test and iterate to develop a culturally sensitive and meaningful risk communication tool that can motivate T2D preventative behaviors. We adopted a novel methodology, "Patient and Public Involvement (PPI) Hawkers," where we approached patrons at hawker centers and public eateries frequented by all local residents to evaluate and test 3 prototypes for the tool. The three prototypes were (1) "Diabetes Onset"-estimated age of diabetes onset of T2D based on one's risk factors, (2) "Relative Risk"-the relative risk of T2D is presented in a 1-10 scale indicating where one's risk score lie in relation to others, and (3) "Metabolic Age"-the median age of the risk category based on one's risk factors, presented to be compared against their chronological age. We gathered reactions and feedback through rapid testing and iteration to understand which risk result presentation would be received the best. All the collected data were revisited and analyzed using an inductive thematic analysis to identify the key characteristics contributing to an effective risk communication tool. We engaged with 112 participants (female: n=59, 56%) across 6 hawker centers. The key characteristics that were important to participants emerged in four main themes: (1) appeal and user experience, in terms of format and readability; (2) trust and validity of the institution providing the tool and the accuracy of the risk result; (3) threat appraisal: salience of risk information, which influenced their risk perception; and (4) coping appraisal: facilitators for behavior change, which impacted their intention for implementing T2D preventative behaviors. The predictive nature of the prototype entitled "Diabetes Onset" was poorly received and removed after the first iteration. The Relative Risk prototype was valued for being straightforward but feared to be boring. The Metabolic Age prototype was anticipated to be more motivating for behavior change, but there were some concerns that the terminology may not be understood by everyone. Participants were divided on which of the 2 prototypes, "Metabolic Age" or "Relative Risk," they would favor adopting. Further testing is now required to determine which prototype will be more effective in motivating behavior change. This study's insights on the design process and valued characteristics of a risk communication tool will inform future development of such interventions.

Patient and public involvement in HIV research: a mapping review and development of an online evidence map.

Increasing evidence indicates the benefits of patient and public involvement (PPI) in medical research, and PPI is increasingly expected by funders and publishers. We conducted a mapping review of studies reporting examples of PPI implementation in HIV research, and developed an online evidence map to guide HIV researchers. We systematically searched Medline and Embase up until 18 August 2024, including search terms with variations for PPI and HIV. We extracted information from identified studies in duplicate and analysed the data descriptively and qualitatively to describe types of PPI models and reported benefits, challenges, and mitigation strategies. This study was co-initiated and co-led by people living with HIV. We identified 17 studies reporting PPI in HIV research between 1992 and August 2024. Most PPI examples informed prospective clinical studies, but also qualitative research, questionnaire development, research priority setting and surveys. Ten studies described the number and characteristics of PPI members involved. We observed four PPI models, from a model that solely engaged PPI members for a specific task to a model whereby PPI representatives were integrated into the study team with decision-making authority. Benefits reported included wider dissemination of research results, better understanding of research material and results, and higher levels of trust and learning between researcher and communities. The most commonly reported challenges were the lack of specific resources for PPI, differing levels of knowledge and expertise, concern about HIV status disclosure, and lack of diversity of the PPI team. Uneven power dynamics, tensions, and differing expectations between stake-holder groups were also frequently noted. This mapping review summarizes published examples of PPI in HIV research for various phases of research. There is a clear need to strengthen the reporting on PPI processes in HIV research, for example by following the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 2 guidelines, and developing guidance on its hands-on implementation. We embedded PPI from study inception onwards, which potentially pre-empted some of the challenges reported in the reviewed examples. The resulting online evidence map is a starting point to guide researchers on integrating PPI into their own research.

Using the Person-Based Approach to Co-Create and Optimize an App-Based Intervention to Support Better Sleep for Adolescents in the United Kingdom: Mixed Methods Study.

Poor sleep is a common problem in adolescents aged 14 to 18 years. Difficulties with sleep have been found to have a bidirectional link to mental health problems. This new research sought to involve young people in the co-creation of a new app, particularly those from underserved communities. The Sleep Solved app uses science-based advice to improve sleep-related behaviors and well-being. The app was developed using the person-based approach, underpinned by the social cognitive theory and the social-ecological model of sleep health. Young people (aged 14-18 y) were recruited from across the United Kingdom to contribute to patient and public involvement (PPI) activities. In partnership with our peer researcher (MHJ), we used a multitude of methods to engage with PPI contributors, including web-based workshops, surveys, think-aloud interviews, focus groups, and app beta testing. A total of 85 young people provided PPI feedback: 54 (64%) young women, 27 (32%) young men, 2 (2%) genderfluid people, 1 (1%) nonbinary person, and 1 (1%) who reported "prefer not to say." Their levels of deprivation ranged from among the 40% most deprived to the 20% least deprived areas. Most had self-identified sleep problems, ranging from 2 to 3 times per week to >4 times per week. Attitudes toward the app were positive, with praise for its usability and use of science-based yet accessible information. Think-aloud interviews and a focus group identified a range of elements that may influence the use of the app, including the need to pay attention to language choices and readability. User experiences in the form of narrated audio clips were used to normalize sleep problems and provide examples of how the app had helped these users. Young people were interested in using an app to better support their sleep and mental health. The app was co-created with strong links to theory- and evidence-based sleep hygiene behaviors. Future work to establish the effectiveness of the intervention, perhaps in a randomized controlled trial, would provide support for potential UK-wide rollout.

Designing infographics in health research with patients and the public: A scoping review

Abstract Patient and public involvement (PPI) in health research is increasing, in recognition for its potential to enhance the quality and relevance of research. To date, there has been no comprehensive review of the literature on the design of infographics with patients and the public in health research. This scoping review aims to explore the extent and nature of PPI in the design of infographics, a commonly used tool for communicating complex health information to diverse audiences. The review used Arksey and O’Malley’s methodological framework by Levac et al. Comprehensive searches were carried out in the following databases: Scopus, PubMed Central, Web of Science, EMBASE, CINAHL Complete, PsychINFO, and Cochrane Library. Identified citations were exported to Endnote and imported into Rayyan software for title and abstract screening. Preliminary results report a total of 738 citations imported, out of which 364 duplicates were removed and 374 citations underwent title and abstract screening. Of these, 80 citations were relevant for full-text review. Two independent reviewers evaluated full texts, resolving discrepancies through discussion or by a third reviewer. 62 studies were included in the review. Relevant data was extracted, and numeric and narrative analyses were performed to synthesize findings across included studies. The review found growing interest in PPI for health infographic design, using diverse approaches to engage patients and the public at various design stages. A wide variety of health topics were represented including disease specific topics, pain and weight gain. Common themes identified included the importance of accessibility, clarity, and cultural sensitivity in infographic development, as well as challenges related to generalisability, social desirability bias and ensuring meaningful involvement. This review offers insights and suggests further research and practice in leveraging PPI to optimize the design and impact of health infographics. Key messages • Growing Interest and Importance of Patient and Public Involvement (PPI) in Health Research Design. • Challenges and Opportunities in Infographic Design for Health Communication.

CARD-SARC: mixed-method study to develop a disease-specific health-related quality of life tool for cardiac sarcoidosis

Abstract Introduction Sarcoidosis is a rare inflammatory condition caused by the formation of lumps (granulomas) of abnormal tissue in any organ, and can affect physical, functional, mental, social and economic aspects of life. People living with cardiac sarcoidosis (CS) are likely to have worse clinical outcomes and greater impairment on health-related quality of life (HRQoL) than other sarcoidosis manifestations. HRQoL is the main concern for people living with sarcoidosis. However, measuring HRQoL in people with CS is difficult as existing tools focus on other forms of sarcoidosis (for example, lung, eye or skin involvement) or for specific cardiac symptoms (for example, atrial fibrillation, angina or heart failure), but not specifically for CS. Purpose To develop a disease-specific patient-reported outcome measure (CARD-SARC) to assess the impact of CS on HRQoL. Methods A sequential exploratory mixed-method, multicentre observational cohort study using a clinimetric approach was conducted. The McMaster Framework for evaluative instruments involved three steps (item selection, item scaling and item reduction) which were complemented with recommendations from the consensus-based standards for the selection of health measurement instruments (COSMIN). The item-generation process connected data from quantitative (theory, research findings and systematic review) and qualitative components (qualitative semistructured interviews, clinical observations and experts’ opinion). A simultaneous triangulation (QUAN+qual) method was followed to ensure a comprehensive list of preliminary items. The formatting of items was guided by patient and public involvement (PPI) with a 2-weeks recall period. The item reduction strategy was led by PPI and an international multidisciplinary clinical CS-experts. Results 740 potential items were generated by converging all the different sources and techniques. After removal of duplicates and simultaneous triangulation, a preliminary list with 111 items was reviewed by the CS-expert panel with 26 members (including 11 pulmonologists, 7 cardiologists, 5 CS-patients and 3 specialist-nurses). After a consensus meeting, the CARD-SARC included 61 relevant items in six sections for pilot-testing: "functioning", "social, leisure and occupation", "emotional", psychological", "physical" and "healthcare/self-care". Conclusions This study combined a robust methodology with active PPI engagement to develop the first disease-specific HRQoL tool for CS. Each data source was planned independently, however the input from PPI members was critical during the simultaneous triangulation for item-generation. The contributions of CS-experts (members of the PPI group and clinical multidisciplinary experts) enhanced the content validity of the CARD-SARC. The CARD-SARC has the potential to influence clinical management and treatment options, future research and health-economic stakeholders’ decisions for CS.

Using PPI and UDL principles to design a gastrointestinal endoscopy patient information video series

Abstract Introduction Patients undergoing GI endoscopy often experience anxiety and due to limited health literacy. Traditional paper-based information leaflets are often not sufficient to accommodate for the diverse way in which people consume information. Public and patient involvement (PPI) and universal design for learning are two well-described pedagogical principles. We wanted to use these principles to design more effective patient education materials. Objectives Given the heterogeneity of resources available to patients, the authors wanted to develop a high-quality and trustable video resources for patients that would be available on our hospital website. These videos would be co-designed by patients and ancillary staff, through the formation of a key stakeholder panel. Results Using PPI principles, we were able to improve the relevance and quality of our content, through the use of storyboards and the expertise of the stakeholder panel. Through the three key UDL principles of multiple means of representation, engagement and action and expression, we were able to ensure that our videos were accessible and appropriate for all of our patients. Initial feedback from stakeholders and patients provided valuable insights, prompting necessary adjustments for accuracy and patient understanding. This comprehensive approach underscores the commitment to enhancing healthcare delivery. Our project is the first guide in combining both pedagogical principles in the development of patient information and education materials. Conclusions The meticulous steps taken, from stakeholder engagement to video production, reflect a commitment to inclusivity and patient-centred care. Ongoing evaluation and feedback mechanisms ensure continuous improvement, contributing to the overall success and sustainability of the digital service. Key messages • This is the first research/patient education piece designed using both PPI and UDL principles. • The importance of patient-centred educational design is key to improving health literacy and education in our patients.

An anthropological critique of psychiatric rating scales

SUMMARY This article discusses sceptical arguments about measurement scales. Measurement scales are part of a promising agenda of openness, transparency and patient and public involvement (PPI) in medical research, but have received critical, sometimes hostile attention from anthropologists. This is because scales repackage localised cultural assumptions about distress as something universal and pan-human and have the capacity to reshape people's interior lives in unhelpful, possibly harmful ways. We take as an example the Patient Health Questionnaire-9 (PHQ-9). Use of the PHQ-9 is currently mandated by major funders. But its history suggests flawed PPI and a lack of openness. The article suggests a constructive role for anthropology in mental health research, using ethnographic evidence and theory to show how, although they have their uses, mental health scales should not be regarded as inert or harmless.

Development of a toolkit to help parents/caregivers manage feeding problems in autistic children: A protocol for a realist synthesis and toolkit co-design.

Many autistic children have feeding problems, typically eating a limited range of foods. Feeding problems affect quality of life, health, and development. Research suggests that parents are often unsure when to or whether to seek help. When they do, local provision of help across the UK is often lacking. A toolkit could offer a tailored, accessible, and scalable early intervention to support parents. We aim to develop the blueprint of a toolkit to help parents/caregivers manage feeding problems in their autistic children. Medical Research Council guidance on developing complex interventions informs three successive work packages: Realist review: a literature search and analysis using realist theory of logic to construct programme theory(s) in line with RAMESES (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) guidance.Realist evaluation: interviews of three groups: autistic children, young people and adults (experts), parents/caregivers of autistic children (parents), and professionals who help parents manage feeding problems (professionals) across the UK. Analysis of verbatim interview transcripts using realist theory of logic to refine programme theory(s).Co-design of the toolkit blueprint: behaviour change theory applied to the programme theory(s) will generate candidate components for the online tool. A blueprint (a detailed textual outline) will be co-designed. A participatory research team of experts, parents, and professionals will be involved in each work package. Where consensus is needed it will be reached by asynchronous nominal group technique. A PPI (public and patient involvement) advisory group of experts and parents will ensure the project is relevant, respectful, and accessible. Findings of each step will be disseminated via journal publications, conferences, social media, as well as PPI-co-produced webinars and a dissemination event. On completion, this project will provide the foundation for the subsequent development and refinement of the prototype toolkit.

Patient and Public Involvement in Research Evaluating Integrated Care for People Experiencing Homelessness: Findings From the PHOENIx Community Pharmacy Pilot Randomised-Controlled Trial.

There is a paucity of research on and a limited understanding of patient and public involvement (PPI) in the context of research in homelessness and, in particular, direct involvement of people with lived and living experience of homelessness (PEH) as expert advisors. We aim to report on outcomes and reflections from lived experience advisory panel (LEAP) meetings and PPI activities, held throughout the study lifecycle of a pilot randomised-controlled trial (RCT) focused on evaluating integrated health and practical support for PEH. Community Pharmacy Homeless Outreach Engagement Non-medical Independent prescribing Rx (PHOENIx Community Pharmacy RCT) is an integrated health and social care intervention for people experiencing homelessness who present to community pharmacy. Intervention includes weekly support from a pharmacist prescriber and a third sector support worker for up to 6 months. PPI activities undertaken throughout the study were documented, including outcomes of LEAP meetings. Outcome reporting followed Guidance for Reporting Involvement of Patients and the Public 2 Short Form (GRIPP2-SF). In total, 17 members were recruited into the LEAP; six meetings (three in two study sites) were held. PPI input was also received through representation from homelessness third sector organisation staff as study co-applicants and core membership in the trial steering committee. Together, the PPI activities helped shape the study proposal, design of study materials, data analysis and dissemination materials. LEAP panel members offered valuable input via their experience and expertise into the delivery and refinement of interventions. Although longitudinal input was received from some LEAP members, ensuring repeat attendance in the pre-planned meetings was challenging. People who face social exclusion and marginalisation can provide highly valuable input as equal partners in co-design and delivery of interventions seeking to improve their health and well-being. Fluid membership and flexible methods of seeking and incorporating advice can offer pragmatic approaches to minimising barriers to continued involvement in research. This study reports findings and learning relevant to involvement of people with lived and living experience of homelessness as advisors in a research study. It is important for researchers to offer fluid memberships and use diverse methods to receive input from lived experience members, as traditional PPI methodology may be insufficient to ensure inclusivity. Staff and volunteers from third sector organisations were important PPI partners who bring their experience based on frontline service provision, often as the first port of call for people experiencing severe and multiple disadvantage. ISRCTN88146807.

A novel methodology to develop low‐intensity psychological treatments

AbstractIntroductionOnly a minority of individuals with mental health disorders receive specialist treatment. Low‐intensity psychological therapies, like guided self‐help, have the potential to bridge this global treatment gap. However, a systematic process for developing such therapies has not been proposed. This study proposes a systematic process for developing low‐intensity psychological treatments, exemplified by a low‐intensity Cognitive Behavioral Therapy (CBT) intervention for children and young people with eating disorders.MethodsA systematic, three‐step process is presented. Firstly, a common elements analysis is conducted within the three pillars of evidence‐based practice (research, clinical expertise, and patient preferences). Secondly, a coding matrix is used to synthesize the common elements across these three pillars. Finally, patient and public involvement (PPI) feedback is incorporated for intervention refinement.ResultsApplying this methodology led to the development of an eight‐module, low intensity CBT intervention for children and young people with eating disorders, covering topics such as regular eating, body image, social media, and managing emotional triggers.ConclusionThe intervention derived from this novel methodology is evidence‐informed and considers implementation into routine practice from the outset. This systematic approach to developing low intensity psychological interventions holds promise for closing the treatment gap irrespective of therapeutic orientation or disorder.

A Qualitative Evidence Synthesis Of The Perceptions And Experiences Of Animal Assisted Interventions For People Living With Dementia

Abstract Background Animal assisted intervention (AAI) is a popular type of non-pharmacological psychosocial intervention, which has a potentially positive effect on physical, psychological, and social functioning for people with dementia. However, there is a lack of evidence regarding the experiences and factors of implementing AAI, and its impacts on people with dementia in different contexts. This review aims to synthesise key stakeholders’ experiences and perceptions of AAI for people with dementia in community settings. Methods We systematically searched Medline, CINAHL, Embase, Scopus, Web of Science, PsycINFO and AgeLine for potentially eligible studies. Thematic analysis was used to synthesise the data from included records. We assessed the methodological limitations using an adaptation of the Critical Appraisal Skills Programme (CASP) and used GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) to assess confidence in the review findings. Two Patient and Public Involvement (PPI) contributors were involved to enhance the quality and relevance of the research. Results We included 14 reports and developed three analytical themes, incorporating a gardening analogy: planting-connecting with animals, growing-engaging in AAI, and nurturing-making AAI work, with 15 key findings. Our review highlights that positive experiences, growing connections, and potential benefits were perceived within AAI. A multicomponent AAI can provide various sensory inputs, attributing to a rich experience. Flexible and individualised AAI tailoring to people’s needs and preferences is important. Additional training and education for staff are necessary to facilitate the intervention, reduce risks, and nurture connections. Conclusion This review describes people’s experiences and perceptions of AAI for people with dementia, and provides recommendations on development and implementation of AAI, with moderate to high confidence in its findings. It is important to consider the factors that influence the implementing AAI identified in this review, to facilitate engagement and long-term impacts in future interventions.

Patient and public involvement in healthcare: a systematic mapping review of systematic reviews – identification of current research and possible directions for future research

ObjectivesTo provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping...

Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research

BackgroundThere has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients’ diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients’ capacity to advocate for their rights and needs.MethodsWe explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations.ResultsCommon themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields.ConclusionPPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process.

Values and value in patient and public involvement: moving beyond methods

Patient and public involvement (PPI) in research has evolved over recent years, yet it often remains an 'optional extra' and, in some cases, tokenistic. Discussions are often focused on processes and methods, and are yet to make PPI the norm; we argue that the conversation needs to change to one of 'value': a culture of common values and principles across all types of research. Taking a reflexive, personalised approach, we reflect on how our team's experiences as patients, healthcare professionals and academics have changed over time and shaped what we value, our involvement in research and the way we involve people in research. We illustrate, through our work together, the productive tensions we experience, our efforts to resolve these through analytic conversations and our ethic of responsibility to each other. Moving forward, embracing reflexivity and supporting relationships can help PPI to become integral to research; a value as opposed to a method.

Perspectives of patient and public partners on their involvement in research.

Patient and public involvement (PPI) in research integrates patient and public perspectives to improve research relevance and quality. The experiences of PPI partners have revealed mixed findings in countries where PPI is well established, but accounts from areas less accustomed to PPI in research are limited. This study aimed to explore the knowledge, motivations, expectations and experiences of PPI representatives in such a setting. This was a qualitative study based on semi-structured interviews. Patient and public partners who had recently been engaged in a PPI collaboration to redesign the written patient material for a clinical study were interviewed. The interviews were analysed using inductive content analysis in which quotations were extracted, coded, categorised and interpreted into themes. Interviews indicated a lack of knowledge concerning PPI in research. Despite their motivation to collaborate, the PPI partners expressed anxiety and doubts about their abilities as laypeople. A sense of societal obligation to collaborate was noted. Groups-based, repetitive sessions fostered productivity, while challenges included off-topic discussions and skepticism. The findings provide valuable insights for shaping PPI processes and recruitment strategies in regions that are new to PPI. This highlights the need to describe the PPI concept when recruiting participants elaborately and to utilise repetitive group-based sessions in the design. Supported by the Novo Nordisk Foundation and the Chief Scientist Office, Scotland. Not relevant.

SP1.10 - Patient Perceptions of Shared Decision-Making in Emergency Surgery

Abstract Background Shared decision-making (SDM), a concept becoming increasingly more prevalent in medical practice, is now considered the ‘gold standard’ approach. Research into patient perceptions of SDM is lacking and barriers to its implementation remain, specifically in emergency general surgery. Considering procedures with high mortality risks makes research into patients understanding of SDM here a critical step for its implementation. Aim Explore what emergency surgery patients understand about SDM and their experience of it. Methods A literature review and scoping review determined the quantity and quality of research in this area enabling long-listing of known SDM concepts. This developed questions and structured discussions for the patient and public involvement (PPI) exercise. This exercise was developed following research, patient representative input and discussions with experienced researchers. Twenty-five participants, identified from the local ELLSA database, were invited with their support-person. Small-group discussions considered how surgeons make decisions, what SDM means to patients, and improving this process. Responses were transcribed, then analysed. Results Nine patients and four supporters attended the exercise. Thematic analysis identified two key themes: patient perceptions of how surgeons make decisions, and patient experiences of emergency surgical decision-making. Subtheme analysis showed participants weren’t aware of surgeons’ use of “30-day mortality” and couldn’t quantify surgical risk, feeling time pressures and out-of-control. They relied on surgeons to make their decision. Conclusions Patients who’ve undergone emergency surgery don’t understand how surgeons make emergency surgical decisions. Many reported not experiencing SDM at all. This work provides the first patient-insights into an area requiring more research – on a larger scale.

Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study

BackgroundA Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.MethodsThis study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis.ResultsThree themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change.ConclusionsFamily carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors’ engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.