Patient And Public Involvement Research Articles

Patient and Public Involvement in Stroke and Aphasia Research: a Thematic Analysis

<h3>Research Objectives</h3> To explore the views of people who live with chronic stroke and aphasia on their potential involvement as research partners. <h3>Design</h3> Qualitative study: semi-structured interviews. Participatory research model with a Patient and Public Involvement (PPI) partner: a person with chronic stroke-induced aphasia. <h3>Setting</h3> On line interviews (zoom). <h3>Participants</h3> Inclusion criteria:<ul><li>(1)to have experienced a stroke,</li><li>(2)to be in the chronic stage of stroke (> 6 months post-stroke)</li><li>(3)to speak, understand, read, and write English post-stroke</li><li>(4)to be socially active as confirmed from the case history</li><li>(5)to have at least one academic qualification, and</li><li>(6)to have had previous research experience, whether as students or as researchers.</li></ul><ul><li>An additional inclusion criterion for PWA was to show evidence, from case history interviews, of mild-moderate chronic aphasia.</li></ul> <h3>Participants</h3> Eight people with chronic stroke, four with concomitant aphasia and four without. <h3>Interventions</h3> N/A. <h3>Main Outcome Measures</h3> A thematic analysis following Braun and Clarke 6-step framework. Implementation of outcomes on the International Classification of disability F framework. <h3>Results</h3> Inductive thematic analysis generated four themes:<ul><li>(1)the kinds of Restrictions that make involvement in research difficult,</li><li>(2)the preferred levels and ways of Involvement during the research process,</li><li>(3)the Support required for active and collaborative involvement, and</li><li>(4)the Impact of their involvement and how it benefits the study's outcomes.</li></ul> <h3>Conclusions</h3> People living with chronic stroke and aphasia are willing to be involved in PPI stroke and aphasia studies, if researchers provide the necessary robust support environment. The findings provide new evidence about how patient partnership models can support people with chronic communication deficits to contribute meaningfully to co-produced research. <h3>Author(s) Disclosures</h3> The authors declared no potential conflict of interest with respect to the research, authorship, and/or publication of this article.

PD52 The Role Of Public Consultation In CONITEC Recommendations Between 2012 And 2020: An Introductory Analysis

IntroductionPublic consultation is a strategy for patient and public involvement (PPI) assured by the National Committee for Health Technology Incorporation in Brazilian Public Health System (CONITEC)´s normative framework. It aims to obtain society’s views on the matters under evaluation. It is made available after CONITEC issues an initial recommendation, which will be reviewed in light of society contributions. This paper examines the cases where the final recommendations differed from the initial ones in technology assessments carried out between 2012 and 2020, taking into account the arguments used by the CONITEC Plenary to support the modification.MethodsFrom a total of 361 public consultations referring to the assessment of health technologies carried out by CONITEC between 2012 and 2020, 40 final reports of health technology assessment (HTA) processes that had changes from the initial to the final recommendation were examined. Then, analytical categories were built so that justifications for the change were investigated and the interpretations produced. The empirical approach excluded public consultations regarding clinical protocols and therapeutic guidelines.ResultsIt was observed that, in 39 cases, the change occurred from an unfavorable position to a favorable position for the technology incorporation. The main reasons for changing the plenary’s decision were proposals to renegotiate the prices of technologies (that generate changes in the results of economic evaluation and budget impact analysis), the receipt of new evidence and experience, and opinion arguments sent mainly by health professionals.ConclusionsThe analyzed data has shown that the changes in recommendations are mostly based on the content of contributions which led to changes in the assessment of clinical evidence, economic evaluation and budget impact. Thus, it appears that public consultation has been consolidated as a relevant instrument to inform the deliberative process in HTA in Brazilian Public Health System.

PP127 Impact Of Brazilian Patient Testimonials On Medical Devices And Public Confidence In The Healthcare Decision-Making

IntroductionSince October 2020, Conitec has made public calls (PCs) to invite patients and family members to express perspectives during committee meetings. This study seeks to reflect about the impact of the newest patient and public involvement (PPI) Conitec strategy and how it can contribute to increase patient direct involvement and public confidence regarding Brazilian health decisions in medical devices.MethodsWe conducted a document analysis after searching for PCs addressed to medical devices in the section “Patient Perspectives” on Conitec´s website until Aug 31, 2021.ResultsFrom 64 PCs, five were related to medical devices. Rotational thromboelastometry for transfusion controls: Ended upon applicant request. Transcatheter aortic valve implantation (TAVI): One patient gave his testimonial, explaining how it impacted his quality of life and daily activities, besides answering questions from the committee. The testimonial was not included in the recommendation report. After the public consultation, the initial recommendation changed from non-reimbursement to reimbursement. Botton™ probe for gastrotomy: Eleven people volunteered and a family member was selected. She expressed the importance of the device in her son’s quality of life, making ordinary activities more accessible, helping in the physiotherapy sessions, reducing hospitalizations, and supporting her son’s socialization. The initial recommendation was to reimburse it. iStent Inject Trabecular Micro-Bypass System™ (glaucoma treatment): No patients volunteered. The final recommendation report informed that Conitec received 55 comments through public consultation, including experiences and opinions about the technology. After the public consultation, there was a change from the initial to the final recommendation, from non-incorporation to incorporation. Non-invasive ventilation (cystic fibrosis treatment): There were five volunteers and a mother of twins, both with cystic fibrosis, gave her testimonial. She expressed the importance of this device in her kids’ quality of life, allowing them to sleep better, eat and study, control the symptoms, and reduce hospitalizations and antibiotic usage.ConclusionsAspects such as documenting this participation, communicating and offering support to the public and patients, analysis and transparency are essential for evaluating and improving this strategy.

PD51 Patient Perspective: A Preliminary Analysis Of The First Year Of The Patient Involvement in CONITEC Meetings

IntroductionThe Patient Perspective is an initiative to include the testimonials of patients or their representatives at the time of the initial recommendation of health technology assessment (HTA) processes developed by the National Committee for Health Technology Incorporation in the Brazilian Public Health System (CONITEC). It allows these actors to be involved prior to the public consultation. This action is articulated with a framework of strategies to encourage patient and public involvement (PPI) in HTA in Brazilian Public Health System (SUS). This paper aims to analyze the first year of its implementation.MethodsThis is a descriptive study, based on document analysis (minutes of meetings, technical and society reports, videos of CONITEC meetings, tables for internal control, etc.) and systematic observation of the activities related to the initiative. Field notes were taken and their contents were coded, following content analysis criteria.ResultsFrom December 2020 to November 2021, 1,052 subscribers were registered in 75 public calls, which resulted in the participation of 42 people. The testimonials presented information about the illness experience, its impact on quality of life, use of technologies, and difficulties of accessing and adherence to treatment. The patient perspective has been useful to give visibility to specific dimensions of experiences regarding not only the health conditions but SUS as well. Furthermore, some testimonials produced tensions and repercussions about HTA processes, such as the consideration of aspects or technologies not covered in the clinical studies and thus the HTA, as well as the need of reviewing some results of the technical report.ConclusionsThe patient perspective has had the support of the target audience. Additionally, it has been successful in including various types of participants and different aspects of the experience with the health condition and/or the technologies under evaluation. In general, it has been possible to observe the diversification of modes of PPI and institutional learning towards the improvement of HTA in SUS.

Patient views on asthma diagnosis and how a clinical decision support system could help: A qualitative study.

Making a diagnosis of asthma can be challenging for clinicians and patients. A clinical decision support system (CDSS) for use in primary care including a patient-facing mode, could change how information is shared between patients and healthcare professionalsand improve the diagnostic process. Participants diagnosed with asthma within the last 5 years were recruited from general practices across four UK regions. In-depth interviews were used to explore patient experiences relating to their asthma diagnosis and to understand how a CDSS could be used to improve the diagnostic process for patients. Interviews were audio recorded, transcribed verbatim and analysed using a thematic approach. Seventeenparticipants (12 female) undertook interviews, including 14 individuals and 3 parents of children with asthma. Being diagnosed with asthma was generally considered an uncertain process. Participants felt a lack of consultation time and poor communication affected their understanding of asthma and what to expect. Had the nature of asthma and the steps required to make a diagnosis been explained more clearly, patients felt their understanding and engagement in asthma self-management could have been improved. Participants considered that a CDSS could provide resources to support the diagnostic process, prompt dialogue, aid understanding and support shared decision-making. Undergoing an asthma diagnosis was uncertain for patients if their ideas and concerns were not addressed by clinicians and were influenced by a lack of consultation time and limitations in communication. An asthma diagnosis CDSS could provide structure and an interface to prompt dialogue, provide visuals about asthma to aid understandingand encourage patient involvement. Prespecified semistructured interview topic guides (young person and adult versions) were developed by the research team and piloted with members of the Asthma UK Centre for Applied Research Patient and Public Involvement (PPI) group. Findings were regularly discussed within the research group and with PPI colleagues to aid the interpretation of data.

The public and patient involvement imperative in Ireland: Building on policy drivers.

What can we learn from the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions? Depending on region and context, the terminology and heritage of involvement in research vary. In this paper, we draw on global traditions to explore dominant themes and key considerations and critiques pertaining to PPI in order to inform a PPI culture shift in Ireland. We then describe the heritage of PPI in Ireland and present the case for combining methodological imperatives with policy drivers to support and encourage meaningful involvement. Specifically, we propose that PPI can be enriched by the theory and processes of participatory health research (PHR); and that implementation requires concurrent capacity building. We conclude with a call for Irish researchers (authors of this paper included) to consider the conceptual complexities and nuances of a participatory approach to build on the policy imperatives driving PPI and to contribute to the international evidence base and research culture. Specifically, we call for Irish health researchers and funders to consider and reflect on: (1) the rich literature of PHR as a resource for enacting meaningful PPI; (2) the roots and origins of varying participatory health research methods; (3) how community/patient groups can lead health research; and (4) co-learning and partnership synergy to create space for both academic and community expertise; and (5) the importance of using standardized reporting tools.

Redefining innovation in sexual medicine: patients and public involvement to inform patient-centered web-based interventions for female sexual dysfunctions

Despite the high prevalence and the enormous burden caused by sexual dysfunctions in Germany, access to therapeutic interventions is still limited. Web-based patient-centered approaches value patients’ needs and improve access and quality in health care. In research patient and public involvement (PPI) can contribute to shape patient-relevant therapies. The aim is to conduct a representative survey in Germany on healthcare needs, attitudes, and behavior to inform future web-based multimodal treatment approaches for female sexual dysfunctions (FSD). For PPI representatives associated with FSD or predispositions for impairments in sexual function were recruited (e.g., endometriosis, cancer, sexual violence, female genital mutilation/cutting, and others). Between July and December 2021 stakeholders participate as co-research-members (n=3) and provide counseling in an advisory group (n=5) on the conception, interpretation, and dissemination of results. The representative survey is conducted by YouGov. Samples are drawn from a panel that matches a random sample of respondents drawn from the German Census. The preliminary results confirmed that health literacy of female patients is limited and counseling by medical health care providers in Germany hardly exist. Stakeholders advocated for clinical trials on digital interventions integrating psychosocial and physical treatment elements are tailored to the needs of different target groups. Based on PPI-recommendations a questionnaire for a representative survey with n=1200 (60% f, 40% m) participants was designed to inform future clinical trials on digital interventions. Association between demographic variables, risk factors, FSD, and health care preferences will be analyzed using multinomial logistic regressions. Sex-related differences will be addressed with χ2 tests. PPI had a strong impact on the development of the questionnaire and design of future translational studies and clinical trials. Further research is needed to validate instruments to systematically evaluate the quality and impact of PPI in research projects. No conflict of interest

Role of primary care pharmacists in the post-hospital discharge care of patients: a scoping review protocol

BackgroundEvidence has shown that there is a significant problem with medication safety when patients are transferred between settings. The role of community pharmacists and hospital pharmacists in facilitating transition of care has been well-researched. However, with the developing role of pharmacists in general practice as part of a multi-disciplinary team, little is known about their role in improving transition of care when patients move from secondary to primary care. The key objective of this scoping review is to understand the nature and extent of the role of primary care pharmacists for patients recently discharged from secondary care.MethodsThis scoping review will follow the Joanna Briggs Institute (JBI) methodology for scoping review underpinned by the Arksey and O’Malley methodology and reported in accordance with the Preferred Reporting Items for Systematic Reviews Extension for Scoping Reviews (PRISMA-ScR) guidelines. The following electronic databases will be systematically searched: MEDLINE, EMBASE, PubMed, Cochrane Central Register of Controlled Trials (CENTRAL), Web of Science and NICE Evidence. Reference lists of included full texts will be searched for relevant papers, in addition to grey literature which includes websites of relevant professional organisations. Primary studies, published in the English language that involved a primary care pharmacist-led intervention post-hospital discharge will be included. Two independent reviewers will screen studies against eligibility criteria and use a piloted data extraction form to extract data related to the review questions. The data will be presented in tabular form and assessed for key themes to identify gaps and inform future research.DiscussionThis scoping review will map current evidence surrounding the role of primary care pharmacists in the post-hospital discharge care of patients. Findings will inform ongoing research to support safer transfer-of-care post-hospital discharge and identify ways in which collaboration between healthcare professionals can be improved. This review anticipates guiding the inclusion of patient and public involvement (PPI) at the consultation stage to validate and build on the findings.

Involving young people in sexual health research and service improvement: conceptual analysis of patient and public involvement (PPI) in three projects

BackgroundAlthough increasingly recognised as valuable within sexual and reproductive health (SRH) research and service improvement, examples of patient and public involvement (PPI) are underdocumented, including specific issues relating to young...

Do we screen, examine or assess to identify the "at-risk" foot in diabetes-time for agreed terms and definitions?

Do we screen, examine or assess to identify the "at-risk" foot in diabetes-time for agreed terms and definitions?

23 CO-DESIGNING A PRIMARY-CARE INTERVENTION TO REVERSE FRAILTY AND BUILD RESILIENCE THROUGH PUBLIC AND PATIENT INVOLVEMENT WITH OLDER PEOPLE

Abstract Background An essential consideration in health research is to conduct research with members of the public rather than for them. Public and Patient Involvement (PPI) of older people in research can improve enrolment, relevance and impact. However, few studies with PPI in frailty research have been identified. PPI has fallen during the Covid-19 pandemic. We aimed to involve older people in co-designing a Randomised-Control Trial (RCT) intervention to reverse frailty and build resilience. We also wished to encourage wider use of PPI with older people by outlining our approach. Methods Involvement of older people was undertaken in three stages. Eighteen over 65-year-olds helped co-design an exercise intervention in two group discussions using the Socratic education method. Ninety-four contributed intervention feedback in one-on-one telephone interviews over nine months. Ten contributors helped optimise the intervention in three online workshops. Multidisciplinary team input and systematic review supported co-design. Results Eleven home-based resistance exercises were co-designed by group discussion contributors (mean age 75, 61% female). Frailty intervention format, gender balance and GP follow-up were shaped in telephone interviews (mean age 77, 63% female). Dietary guidance and patient communication were co-designed in workshops (mean age 71, 60% female). Technology proved no barrier to PPI. The co-designed frailty intervention is being evaluated in a definitive RCT. Conclusion We enabled meaningful involvement of 112 older people in co-design of an intervention to reverse frailty and build resilience in diverse ways. Inclusive involvement can be achieved during a pandemic. Feedback enhanced intervention feasibility for real-world primary-care.

Patient and public involvement in an international rheumatology translational research project: an evaluation

BackgroundRheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumatoid arthritis (RA) and designing clinical trials to reduce the risk of disease development through immune-tolerising and other treatments. We conducted a mid-term evaluation of patient and public involvement (PPI) within the project.MethodsTwo surveys on PPI were co-designed by the PPI Coordinator, Patient/Public Research Partners (PRPs) and a researcher. Both anonymous, electronic surveys were distributed to 61 researchers and 9 PRPs. Quantitative survey data were analysed using descriptive statistics and free text responses underwent inductive thematic analysis.ResultsResearcher and Patient response rates were 33% and 78%, respectively. Quantitative Researcher Survey data highlighted that (i) responding researchers represented all seven Work Packages (WPs), (ii) 40% thought PRPs had made a large or extremely large contribution to their own WPs, (iii) 55% thought PPI has had a moderate or large impact on RTCure, (iv) 75% worked with PRPs in RTCure, and (v) 60% said PRPs had affected their research thinking. Quantitative PRP Survey data highlighted that (i) PRPs were most involved in four WPs, (ii) 43% thought they had made a minor contribution to their main WP, (iii) 57% thought PPI has had a small impact on RTCure, and (iv) 57% thought they received too little feedback on the outcome of their contribution to different tasks. Four main themes were identified in both surveys: ‘PRP contributions’, ‘Experiences of PPI’, ‘Impact of PPI on RTCure’, and ‘How PPI can be improved’. Two additional themes from the Researcher Survey were ‘Impact of PPI on researchers’ and ‘Influence on Future Projects’, and from the PRP Survey were ‘Impact of PPI on PRPs’ and ‘Engagement with PRPs’.ConclusionPPI seemed to have a significant impact on RTCure, however, PRPs were less aware. A focus on improving communication between PRPs and researchers (facilitated by the PPI Coordinator), and providing PPI training for researchers is likely to improve involvement. Complex legal agreements for PRPs should be avoided and careful attention paid to appropriate PRP compensation.

Applying Patient and Public Involvement in preclinical research: A co-created scoping review.

Patient and Public Involvement (PPI) in research aims to improve the quality, relevanceand appropriateness of research. PPI has an established role in clinical research where there is evidence of benefit, and where policymakers and funders place continued emphasis on its inclusion. However, for preclinical research, PPI has not yet achieved the same level of integration. As more researchers, including our team, aim to include PPI in preclinical research, the development of an evidence-based approach is important. Therefore, this scoping review aimed to identify and map studies where PPI has been used in preclinical research and develop principles that can be applied in other projects. A scoping review was conducted to search the literature in Medline (PubMed), EMBASE, CINAHL, PsycInfoand Web of Science Core Collection to identify applied examples of preclinical PPI. Two independent reviewers conducted study selection and data extraction separately. Data were extracted relating to PPI in terms of (i) rationale and aims, (ii) approach used, (iii) benefits and challenges, (iv) impact and evaluationand (v) learning opportunities for preclinical PPI. Findings were reviewed collaboratively by PPI contributors and the research team to identify principles that could be applied to other projects. Nine studies were included in the final review with the majority of included studies reporting PPI to improve the relevance of their research, using approaches such as PPI advisory panels and workshops. Researchers report several benefits and challenges, although evidence of formal evaluation is limited. Although currently there are few examples of preclinical research studies reporting empirical PPI activity, their findings may support those aiming to use PPI in preclinical research. Through collaborative analysis of the scoping review findings, several principles were developed that may be useful for other preclinical researchers. 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 researchersand PPI facilitators collaborated as co-authors on the conceptualization, executionand writing of this review, including refining the findings into the set of principles reported here.

Reflections on RRI in “TAS for Health at Home”

We reflect on our experiences using Responsible Research and Innovation (RRI) in the project “TAS for Health at Home”. Driven by a multi-disciplinary research team that consisted of experts in mental health, stroke rehabilitation, management of multiple sclerosis, human factors, human-computer interaction, privacy, cybersecurity, architecture, and Patient and Public Involvement (PPI) groups, the project aimed at eliciting user perceptions of autonomous systems supporting healthcare regimes at home. We discuss the home as a unique place to consider RRI approaches and reflect on the actual process of carrying out RRI within the project, including the multi-disciplinarity of the project, our engagement with PPI groups, and how we involved the wider community concerned with Trustworthy Autonomous Systems (TAS). We conclude by summarising our reflections and providing a first step towards RRI-based guidelines for developing healthcare technology for the home.

Using the Vitiligo Noticeability Scale in clinical trials: construct validity, interpretability, reliability and acceptability.

Validated outcome measures are needed for vitiligo trials. To assess construct validity, interpretability, reliability and acceptability of the Vitiligo Noticeability Scale (VNS). We used images of vitiligo before and after treatment, plus outcome data, from the HI-Light Vitiligo trial. We compared outcome assessments made by trial participants with assessments of images by clinicians and people with vitiligo who were not trial participants [Patient and Public Involvement (PPI) panel]. Hypothesis testing assessed psychometric properties of the VNS, with κ statistics to assess agreement between outcomes. Three focus groups and two online discussion groups provided insight into the use of VNS by people with vitiligo. Our hypothesis of a positive association between VNS and participant-reported global treatment success was supported for trial participants (κ = 0·41 if VNS success was defined as ≥ 4; κ = 0·71 if VNS success was defined as ≥ 3), but not for the blinded PPI panel (κ = 0·28). As hypothesized, the association with participant-reported global success was higher for VNS (κ = 0·41) than for clinician-reported percentage repigmentation (κ = 0·17). Seventy-five per cent of trial participants valued a VNS of 3 (partial response) as a treatment success. Test-retest reliability was good: κ = 0·69 (95% confidence interval 0·63-0·74). Age and skin phototype did not influence interpretation of the VNS scores. To people with vitiligo, the VNS is an acceptable and meaningful patient-reported outcome measure. Trial participants may assess their vitiligo differently compared with blinded assessors. A VNS score of 3 may be more highly valued by people undergoing vitiligo treatment than was previously thought. What is already known about this topic? Vitiligo is a common condition, and can have a considerable psychological impact. A Vitiligo Core Outcome Set is being developed, to enable the results of vitiligo trials to be compared and combined more easily. The Vitiligo Noticeability Scale (VNS) is a patient-reported outcome measure (PROM) developed in partnership with people with vitiligo; initial validation studies have been promising. What does this study add? The VNS shows good construct validity, reliability and acceptability; it can be used in all ages and skin phototypes. All five levels of the VNS scale should be reported for transparency, to aid interpretation of trial findings, and to facilitate meta-analysis in systematic reviews. VNS assessments made by trial participants and independent observers are likely to be qualitatively different, making blinded assessment of VNS by independent observers difficult to interpret. Blinding of participants to trial interventions is recommended whenever possible. What are the clinical implications of the work? The VNS can be used as a PROM to assess the cosmetic acceptability of repigmentation at individual patches of vitiligo. A VNS score of 3 or more is likely to be valued by patients as a treatment success.

Digital participatory workshops with patients and health professionals to develop an intervention for the management of polypharmacy: results from a mixed-methods evaluation and methodological conclusions

BackgroundIn the COVID-19 pandemic, numerous researchers postponed their patient and public involvement (PPI) activities. This was mainly due to assumptions on patients’ willingness and skills to participate digitally. In fact, digital PPI workshops differ from in-person meetings as some forms of non-verbal cues and body language may be missing and technical barriers may exist. Within our project HYPERION-TransCare we adapted our PPI workshop series for intervention development to a digital format and assessed whether these digital workshops were feasible for patients, health care professionals and researchers.MethodsWe used a digital meeting tool that included communication via audio, video and chat. Discussions were documented simultaneously on a digital white board. Technical support was provided via phone and chat during the workshops and with a technical introduction workshop in advance. The workshop evaluation encompassed observation protocols, participants’ feedback via chat after each workshop on their chance to speak and the usability of the digital tools, and telephone interviews on patients’ and health professionals’ experiences after the end of the workshop series.ResultsObservation protocols showed an active role of moderators in verbally encouraging every participant to get involved. Technical challenges occurred, but were in most cases immediately addressed and solved. Participants median rating of their chance to speak and the usability of the digital tool was “very good”. In the evaluation interviews participants reported a change of perspective and mutual understanding as a main benefit from the PPI workshops and described the atmosphere as inclusive and on equal footing. Benefits of the digital format such as overcoming geographical distance, saving time and combining workshop participation with professional or childcare obligations were reported. Technical support was stressed as a pre-condition for getting actively involved in digital PPI.ConclusionsDigital formats using different didactic and documentation techniques, accompanied by technical support, can foster active patient and public involvement. The advantages of digital PPI formats such as geographical flexibility and saving time for participants as well as the opportunity to prepare and hold workshops in geographically stretched research teams persists beyond the pandemic and may in some cases outweigh the advantages of in-person communication.

The Youth Patient and Public Involvement Café-A youth-led model for meaningful involvement with children and young people.

There are few meaningful frameworks or toolkits that exist for involvement with young people. Coproduction is a more recent patient and public involvement (PPI) approach that emphasizes the importance of power-sharing, to set young people as equal partners in the research process. This paper explores the successes and challenges encountered by one coproduced PPI space for young people. This paper is written by a team of young people who developed and worked on the Youth PPI Café over a period of 18 months. It explores how we developed a youth-led space for involvement in research. The authors have reflected on their experiences, providing examples of how youth PPI and coproduction were delivered in the NHS, in practice. By working 'with' young people, rather than 'for' them, we offer insights into the successes and challenges of an entirely youth-led involvement space. Despite being effective in shaping mental health research for children and young people, we faced challenges with tokenism, resourcing and diversity and inclusion. Involving youth meaningfully in research has the potential to inform studies at a macro- and microlevel, enabling positive change within research and within the systems that support young people. Young people aged 16-24 years with lived experience were included at every stage of this project, from formulation to the delivery and development of the group, to the preparation of this manuscript and its dissemination. Sussex Partnership NHS Foundation Trust's charity 'Heads On' provided funding for this study.

Patient and public involvement in mobile health-based research for hay fever: a qualitative study of patient and public involvement implementation process

BackgroundSmartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and management of chronic diseases. We developed the AllerSearch app to gather real-world data on individual subjective symptoms and lifestyle factors related to hay fever. This study established a foundation for interactive research by adopting novel, diverse perspectives accrued through implementing the principles of patient and public involvement (PPI) in the development of our app.MethodsPatients and members of the public with a history or family history of hay fever were recruited from November 2019 to December 2021 through a dedicated website, social networking services, and web briefing according to the PPI Guidebook 2019 by the Japan Agency for Medical Research and Development. Nine opinion exchange meetings were held from February 2020 to December 2021 to collect opinions and suggestions for updating the app. After each meeting, interactive evaluations from PPI contributors and researchers were collected. The compiled suggestions were then incorporated into the app, establishing an active feedback loop fed by the consistently interactive infrastructure.ResultsFour PPI contributors (one man and three women) were recruited, and 93 items were added/changed in the in-app survey questionnaire in accordance with discussions from the exchange meetings. The exchange meetings emphasized an atmosphere and opportunity for participants to speak up, ensuring frequent opportunities for them to contribute to the research. In March 2020, a public website was created to display real-time outcomes of the number of participants and users’ hay-fever-preventative behaviors. In August 2020, a new PPI-implemented AllerSearch app was released.ConclusionsThis study marks the first research on clinical smartphone apps for hay fever in Japan that implements PPI throughout its timeline from research and development to the publication of research results. Taking advantage of the distinct perspectives offered by PPI contributors, a step was taken toward actualizing a foundation for an interactive research environment. These results should promote future PPI research and foster the establishment of a social construct that enables PPI efforts in various fields.

CN37 Patient and public involvement in research: Reflections and experiences of doctoral cancer nurse researchers in Europe

Patient and public involvement (PPI) means doing research with the patient or members of the public wherein they contribute to research design, conduct and dissemination. Evidence shows the need for guidance about PPI among early career researchers. Our discussions about PPI during a doctoral workshop showed differences in our PPI experiences and the support we received. This motivated us to share our reflections and experiences to highlight gaps in PPI training and support. Between September to November 2021, cancer nurses from seven European countries who attended a doctoral workshop delivered by the European Oncology Nursing Society submitted written reflections of their experiences of PPI within the context of their doctoral research. Ten written reflective pieces were inductively analysed using reflexive thematic analysis to generate initial themes. Audio-recorded focus groups (n=2) with four to six participants were conducted. Focus group data was deductively analysed using the initial themes as framework. Final themes were identified following interpretation and several discussions, until consensus was reached. Four themes were identified in the analysis: (a) evolving recognition and appreciation of PPI, (b) embracing PPI and impact on doctoral studies, (c) the influence of the research environment, and (d) the need to empower doctoral students to integrate PPI in their research journey. Factors such as training, level of support, available funding, and research environment influenced doctoral researchers’ awareness and experiences of PPI . Varying experiences of PPI awareness was noted across Europe showing disparity in guidance about PPI for early career researchers. We recommend provision of early PPI training for doctoral students to support and encourage involvement of patients and the public in their research. Opportunities for sharing PPI experiences to help improve PPI culture in research environments that support doctoral students should be explored.

CN39 Development of a reference model for patient and public involvement in oncology research in French-speaking Switzerland

Patient and public involvement (PPI) in research is increasingly encouraged as a means of improving its validity and relevance. Although gaining momentum, the implementation of PPI in research in Switzerland remains recent. Our aim was to establish a PPI model for cancer research adapted to the local context that will assist researchers to apply PPI approaches within their projects. Two semi-directed focus groups were conducted with 10 local key informants including patient representatives (2), oncology healthcare professionals (3), PPI experts (2), experts in patient-reported measures (2), and health managers (1). A deductive thematic approach was used to identify benefits, limitations and facilitators of establishing a PPI model in cancer research in the local context. In addition, we identified established frameworks in research and/or cancer research to analyze the main concepts and elements to be considered. Consensus was reached on the benefits of involving patients in research, allowing for more specific, relevant, and comprehensive studies. Participants also identified limiting factors such as the lack of PPI culture in healthcare research or the need for a paradigm shift at different levels. Among facilitators for the success and long-term sustainability of PPI were awareness of the resources, capacities of the research organization and capabilities of the patients, the need for PPI training for both researchers and patients, and the recognition of patient’s contributions. Nine different frameworks from seven countries were retained for further analysis. Main elements identified related to the goals to be achieved (why?), the knowledge that patients can contribute (what?), and the types and degree of patients' involvement (who & how?). The resulting SCCL-PPI model is multidimensional, comprising the stages of research, different levels and types of involvement, capabilities required from patients and capacities of the research group/organization. It is important for researchers to make a careful assessment of each of these dimensions. We chose to depict it using the Rubik’s cube to reflect the importance of adaptability of a PPI approach to each individual research project.