Patient And Public Involvement Research Articles

Understanding engagement in diet and dementia prevention research among British South Asians: a short report of findings from a patient and public involvement group.

Dementia is a global public health challenge. Evidence suggests that individuals from South Asian communities are an at-risk group for dementia, partly as a result of early and cumulative exposure to known dementia risk factors, such as obesity and type 2 diabetes. There needs to be more culturally appropriate community engagement to increase awareness of dementia and identify better strategies to encourage participation in dementia-related research. We aimed to better understand the barriers and facilitators towards engaging with, and participating in, diet and dementia related research among British South Asians. This was achieved using a public and patient involvement (PPI) approach. A community-based, engagement event involving information sharing from experts and roundtable discussions with South Asian communities (n = 26 contributors) was held in June 2023 in Newcastle-upon-Tyne, UK. Collaboration from preidentified PPI representatives (n = 3) informed the content and structure of PPI activities, as well as recruitment. Data were synthesised using template analysis, a form of codebook thematic analysis. This involved deductively analysing data using relevant a priori themes, which were expanded upon, or modified, via inductive analysis. The findings highlighted the importance of trust, representation and appreciation of cultural barriers as facilitators to engagement in diet and dementia risk reduction research. Consideration of language barriers, time constraints, social influences and how to embed community outreach activities were reported as driving factors to maximise participation. This PPI work will inform the design and co-creation of a culturally adapted dietary intervention for brain health in accordance with the Medical Research Council and National Institute for Health and Care Research guidance for developing complex interventions.

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.

Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research. Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically. Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.' People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

Assessing parent-child interaction with deaf and hard of hearing infants aged 0-3 years: An international multi-professional e-Delphi.

Most deaf babies are born to hearing families who do not yet have the skills to communicate effectively with their child. Adaptations to communication are important because the quality of parent-child interaction (PCI) predicts how a deaf child develops language. Teachers of Deaf children and Speech and Language Therapists support families with communication in the home. Currently, there are no assessments that appraise how a parent interacts with their deaf baby. Previous research has identified which parent behaviours and approaches are used in PCI assessments in research and practice. The current paper forms consensus on the core content and best practices of a new PCI tool for deaf children aged 0-3 years. An international sample of expert academics and practitioners (n = 83) were recruited to take part in a two-round modified electronic Delphi study. Participants were presented with 69 statements focusing on (i) which parent behaviours were important in assessment (ii) the methods to be used in PCI assessment. Participants rated the extent to which they agreed or disagreed with each statement on a five-point Likert scale and gave comments to support their response. Consensus was defined as >80% of participants rating the statement as a (4) 'highly important' or a (5) 'essential'. If consensus was not reached, participant comments were used to generate new statements which were rated in the second round. This project involved a patient and public involvement (PPI) group of hearing and deaf parents and professionals to design and guide the study. Consensus was achieved on 52 statements and ranged from 80-99%. A further six statements were additionally included. Within the 58 statements included, 36 were parent behaviours which centred on the parent's observation of, and response to, their child's behaviour and/or language. The remaining 22 statements focused on methods used in the assessment such as parents having their PCI filmed, parents having the opportunity to review the video and assess themselves alongside a professional, and parents being involved in subsequent goal setting. This e-Delphi presented the parent behaviours and methods of assessment to be included in a new PCI tool for deaf children. Future co-production work and acceptability and feasibility testing are discussed.

Development and evaluation of a stroke research Public Patient Involvement Panel

Background Public and patient involvement (PPI) is important in stroke research to ensure that research conducted reflects the priorities and needs of people after stroke. Several factors have been found to affect PPI, including location of the research and time requirements for participation. The incidence of stroke is rising, and can result in symptoms including fatigue, depression, and physical/cognitive impairments. Aims 1) Describe the development of a PPI advisory group and a healthcare professional advisory group for stroke rehabilitation research and 2) to explore the perspectives of the members of the PPI groups on being involved in the research process. Methods A stakeholder panel consisting of up to 20 people with stroke, members of the public and healthcare professionals will be formed. A pragmatic purposive sampling technique using snowball sampling will be used to recruit members. The PPI panel will meet four times and will be supported by the guidelines developed from the INVOLVE framework. The PPI panel will be involved as co-researchers in the conceptualisation of future stroke rehabilitation research, the delivery of such studies, the analysis and dissemination of findings. Following the development of the panel, we will conduct semi-structured focus groups to collect qualitative data, examining the perspectives of members. Separate focus groups will be held for people with stroke, family members/cares, and healthcare professionals/researchers. Data will be transcribed and analysed using Braun and Clarke’s Reflexive Thematic Analysis. This will result in a set of themes and subthemes describing participants' opinions and experience of being on a PPI panel in stroke rehabilitation research. Conclusions PPI is an essential part of research in stroke. Stakeholders can provide key insights into the research processes. The results of this qualitative study will provide insight into the barriers and enablers of their participation in PPI in stroke rehabilitation research.

Cancer survivorship: understanding the patients’ journey and perspectives on post-treatment needs

Background Cancer treatments have many adverse effects on patient’s health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful rehabilitation program should also include psycho-social education aimed to reduce anxiety and improve motivation.Methods The current study aimed to collect information on the post-treatment needs of cancer patients including barriers and expectations facing them, their caregivers and their families through consultation in focus group interviews. Cancer survivors living in the Republic of Ireland were recruited from the University Hospital Galway, community-based cancer centres, cancer support groups and social media platforms to participate in the study and attend a focus group interview. The focus group discussions were designed to obtain information on the collective views of cancer survivors on relevant topics selected. The topics were developed in consultation with a patient and public involvement (PPI) group supporting the study. The topics list was circulated to all participants prior to the focus group. The interviews were audio recorded and transcribed verbatim. Focus group transcripts were analysed subjected to a thematic framework analysis using NVivo.ResultsThirty-six participants took part in 9 focus groups. Our analysis uncovered two main themes. The first theme ‘cast adrift with no direction’ was grouped into three sub-themes: everything revolves around treatment; panic and fear; and what exercise should I be doing? The second theme ‘everybody is different’ was clustered into two sub-themes: side effects get in the way; and personalised exercise program.ConclusionThe study highlighted the lack of information and support needed by patients living with and beyond cancer. The study also highlighted the need for a personalised exercise programme designed to target the individual patient symptoms that would be ideal for the mitigation of long term symptoms and in improving QOL.

Patient and public involvement in systematic reviews: frequency, determinants, stages, barriers, and dissemination

ObjectivesTo investigate the frequency, determinants, stages, and barriers of patient and public involvement (PPI) in systematic reviews and to explore its association with the dissemination of reviews. Study Design and SettingWe examined systematic reviews that required the inclusion of a PPI declaration, published in The BMJ between January 1, 2015, and December 31, 2022. Multivariable analysis was used to assess the association between PPI and key variables. We investigated the association between PPI and the dissemination of reviews using Altmetric scores, citations, and full-text views. ResultsA total of 217 systematic reviews were included, of which 56 (25.8%, 95% CI 20.0%–31.6%) included PPI, with a steady increase from 5.9% (1/17) in 2015 to 44.4% (4/35) in 2022. Of the 217 systematic reviews, 160 (73.7%) involved methodologists as co-authors. Factors significantly associated with a higher proportion of PPI included the publication year after 2019 (adjusted odds ratio [aOR] 2.46, 95% CI 1.26–4.83), the involvement of methodologist (aOR 3.08; 95% CI 1.27–7.47), and being led by researchers from high-income countries (aOR 5.47; 95% CI 1.23–24.30). Reviews that included PPI had higher Altmetric scores per month (6.6 vs 3.4, P = .002) and more monthly full-text (1048.6 vs 636.5, P < .001) and PDF (217.7 vs 129.0, P < .001) views than reviews without PPI. However, there was no difference in the monthly citations (2.2 vs 2.0, P = .365) between reviews with and without PPI. ConclusionThe proportion of systematic reviews reporting PPI in The BMJ has increased over time, possibly due to journal policies, but it still remains at a low level. Reviews led by researchers from high-income countries or involving methodologists are associated with a higher frequency of PPI within The BMJ. Furthermore, reviews incorporating PPI within The BMJ have a higher potential for broad dissemination.

'They don't know what to do with our children': Experiences and views on feeding and swallowing from parents of children who use long-term ventilation.

Increasing use of paediatric long-term ventilation (LTV) has been reported around the world over the last two decades and it is anticipated that use of this medical intervention will continue to grow. Research has shown that children who use LTV have risk factors for feeding and swallowing difficulties which result in long-term reliance on non-oral feeding methods. This Patient and Public Involvement (PPI) activity explored experiences of parents of children with LTV on their children's feeding and swallowing journeys. Individual and group interviews with seven parents were conducted. Interview data was then analysed using content analysis. Families discussed a range of themes including impacts on their family, facilitators and barriers to feeding and swallowing journeys, speech and language therapy (SLT) support, their family's healthcare journey in relation to quality of life and future directions for research. This study highlighted potential key areas to explore when identifying ways to improve SLT care and research in feeding and swallowing for children who use LTV.

Participation in physical activity by adolescents with physical disability: Protocol for a national participation snapshot and Delphi consensus study (“Youth Experience Matters”)

Young people with physical disability experience challenges to being physically active. To attain the health benefits of physical activity (PA) and sustain engagement, it is essential that participation is meaningful and enjoyable. This study aims to describe current participation in PA by adolescents with physical disability in Ireland, and to establish consensus on their priorities for enhancing physical activity participation. A parallel convergent mixed methods study will be undertaken, comprising a national cross-sectional quantitative assessment of PA participation (“Participation Snapshot”) and Delphi consensus study (“Delphi”). Adolescents (n=100) aged 13–17 years with a physical disability will be invited to take part. The Participation Snapshot primary outcome is the Children’s Assessment of Participation and Enjoyment (CAPE). Contextual factors including underlying medical diagnosis, demographics, mobility (Functional Mobility Scale), hand function (Manual Ability Classification System) and health related quality of life (Child Health Utility 9D) will also be collected. The Delphi will comprise two to four survey rounds, until consensus is reached. Round 1 consists of a bespoke survey, designed and piloted with a public and patient involvement (PPI) panel, with open-ended questions and Likert scales inviting contributions from adolescents on their prior experience and ideas to enhance participation. Responses will be analysed using inductive thematic analysis to construct items and themes, which will then be deductively mapped to the “F-words” and the family of Participation-Related Constructs frameworks. These items will be presented back to participants in subsequent rounds for selection and ranking, until consensus is achieved on the “top 10 priorities” for enhancing PA participation. The project team and PPI panel will then co-design dissemination material and identify targets for dissemination to relevant stakeholder or policy groups. The findings will provide a basis for developing interventions aiming to enhance future PA participation for adolescents with physical disability.

Exploring individual's public trust in the NHS Test and Trace System – A pragmatic reflexive thematic analysis

ContextDigital contact tracing uses automated systems and location technology embedded on smartphone software for efficient identification of individuals exposed to COVID-19. Such systems are only effective with high compliance, yet compliance is mediated by public trust in the system. This work explored the perception of individual's trust and expectation of the broader Test and Trace system in the United Kingdom (UK) with the upcoming release of the National Health Service's (NHS) COVID-19 app as a case example. MethodsTwelve adults underwent online semi-structured interviews in August 2020, prior to public availability of the COVID-19 app. Pragmatic reflexive thematic analysis was applied inductively to explore common themes between participants, using an organic and recursive process (Braun & Clarke, 2019). ResultsThemes highlighted features of the technology that would be perceived to be trustworthy (Theme 1), and concerns relating to i) whether users would comply with a T&T system (Theme 2) and ii) how a T&T system would handle user's personal data (Theme 3). Two further themes built on aspects of automation within a T&T system and its impact on trust (Theme 4) and how the media altered perceptions of the T&T system (Theme 5). ConclusionsParticipants outlined the need for different user requirements that could be built into the NHS COVID-19 app that would support increased adherence. Concurrently, participants raised questions surrounding personal data and privacy of their data, plus the level of automated versus manual tasks, which impacted perception of trust in the app and wider system. Additionally, themes highlighted that T&T systems do not happen within a vacuum, but within a pre-existing environment influenced by variables such as the media and perception of other's compliance to T&T. ImplicationsSince it's roll-out, controversies surrounding the UK T&T system include concerns about privacy, stigma and uptake. Considering the current piece of work, which anticipated similar concerns prior to public access to COVID-19 app, engaging with the public may have been an important step in improving the perception and compliance with the app. Principles fundamental to patient and public involvement (PPI) and Responsible Research and Innovation (RRI) such as the inclusion of the public in the early development of research and aligning the outcomes of research and innovation with broader societal values and expectations would have been well-applied to this system and should be applied to future autonomous systems requiring high public uptake.

Analysis of core outcome set reporting in coronary intervention trials

BackgroundThis paper will focus on outcome reporting within percutaneous coronary intervention (PCI) trials. A core outcome set (COS) is a standardised set of outcomes that are recommended to be reported...

#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.

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.

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.

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...