Digital undergraduate medical education and patient and carer involvement: a rapid systematic review of current practice.

BACKGROUND: Involving patients and carers in medical students' learning aims to centralise the perspective of healthcare users and supports our future medical workforce in the development of key skills. Medical schools are increasingly using digital technology for teaching and it is timely to understand how to maintain patient and carer involvement in this context. METHODS: Ovid MEDLINE, Ovid EMBASE and medRxiv were searched in October 2020 and reference lists of key articles were hand searched. Eligible studies reported authentic patient or carer involvement in undergraduate medical education where technology was also used. Study quality was assessed by the Mixed Methods Appraisal Tool (MMAT). Levels of patient or carer involvement were assessed using Towle et al.'s (2010) taxonomy, from Level 1 (lowest level) to Level 6 (highest level). RESULTS: Twenty studies were included in this systematic review. In 70% of studies, patients and carers featured in video or web-based case scenarios with no interaction between healthcare users and students. The remaining 30% of studies reported real-time interactions between students and patients via remote clinical encounters. Digital teaching sessions involving patients or carers were perceived to be valuable by students and educators, and increased student engagement, patient-centred attitudes, clinical knowledge, and communication skills. No studies reported the perspective of patients or carers. DISCUSSION: Digital technology has not yet driven higher levels of patient and carer involvement in medical training. "Live" interactions between students and patients are becoming more common but challenges need addressing to ensure positive experiences for all involved. Future teaching should enhance the role of patients and carers in medical education and support them to overcome any potential barriers to doing so remotely.

The impact of patient and public involvement on COVID-19 immunology research: experiences from the UK Coronavirus Immunology Consortium.

BACKGROUND: Patient and Public Involvement (PPI) in clinical trial research is recognised as relevant but the active involvement of patients and the public in basic science or laboratory-based research is seen as more challenging and not often reported. PPI within the UK Coronavirus Immunology Consortium (UK-CIC), a translational research project aimed at tackling some of the key questions about the immune system's response to SARS-CoV-2, is an example of overcoming negative perceptions and obstacles. Given the widespread impact of COVID-19, it was important to consider the impact of UK-CIC research on patients and the public throughout, and the PPI panel were an integral part of the consortium. FINDINGS: Building in funding for a PPI panel to value involvement and ensuring effective expert administrative support and management of PPI were crucial to success. Facilitating relationships and quality interactions between public contributors and researchers required time and commitment to the project from all parties. Through creating a platform and open space to explore diverse views and a wide range of perspectives, PPI was able to influence researchers' ways of thinking about their research and impact future research questions about COVID-19 immunology. Moreover, there was long-term impact from the involvement of the PPI panel in COVID-19 research and their value was reflected in invitations to contribute to additional immunology projects. CONCLUSION: The ability to conduct meaningful PPI with basic immunology research has been shown possible through the UK-CIC in the context of the fast-moving COVID-19 pandemic. The UK-CIC project has laid the foundations for PPI in immunology and this should now be built upon for the advantage of future basic scientific research; PPI can impact greatly on laboratory-based research when given the opportunity to do so.

Patient public involvement (PPI) in health literacy research: Engagement of adults with literacy needs in the co-creation of a hospital-based health literacy plan.

BACKGROUND: People with literacy needs can experience many challenges in accessing, understanding and using health services and health information. Such challenges can adversely impact patient-provider interactions and ultimately, health outcomes. Healthcare providers need to be aware of health literacy (HL) to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes. METHODS: This paper reports on a process of patient and public involvement (PPI) with participants in an adult literacy programme acting as PPI contributors to identify priority areas for a local hospital HL action plan and to develop a protocol for a PPI process with other groups. A qualitative community-based participatory research study design informed by principles of PPI was undertaken, drawing on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co-creation. Three workshops with six PPI contributors took place to identify issues to be included in the hospital action plan. PPI contributors identified issues and grouped these into priority areas using discussion and ranking procedures. RESULTS: Key areas prioritised for HL action by the PPI contributors were: verbal communication, emphasising the patient's right to understand, and improved understanding of medication use. These were incorporated into the action plan. The workshop format and process were deemed acceptable to the group and input on improvements will be incorporated into further work in this area. CONCLUSION: PPI acts as a lever in the knowledge translation process. Genuine engagement with service users can meaningfully contribute to relevant and sustainable changes to services as well as foster the empowerment of service users. PATIENT OR PUBLIC CONTRIBUTION: Members of the public with literacy needs actively participated in the co-creation of a HL action plan for a local hospital and in the development of a protocol for a patient and public process for HL research.

Understanding who is and isn't involved and engaged in health research: capturing and analysing demographic data to diversify patient and public involvement and engagement.

BACKGROUND: Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved in research tend to be aged 61 years or above, White and female. Calls for greater diversity and inclusion in PPIE have become more urgent especially since the COVID-19 pandemic, so that research can better address health inequalities and be relevant for all sectors of society. Yet, there are currently no routine systems or requirements to collect or analyse the demographics of people who get involved in health research in the UK. The aim of this study was to develop to capture and analyse the characteristics of who does and doesn't take part in patient and public involvement and engagement (PPIE) activities. METHODS: As part of its strategic focus on diversity and inclusion, Vocal developed a questionnaire to assess the demographics of people taking part in its PPIE activities. Vocal is a non-profit organisation which supports PPIE in health research across the region of Greater Manchester in England. The questionnaire was implemented across Vocal activities between December 2018 and March 2022. In that time. Vocal was working with approximately 935 public contributors. 329 responses were received: a return rate of 29.3%. Analysis of findings and comparison against local population demographic data, and available national data related to public contributors to health research, was performed. RESULTS: Results show that it is feasible to assess the demographics of people who take part in PPIE activities, through a questionnaire system. Further, our emerging data indicate that Vocal are involving people from a wider range of ages and with a greater diversity of ethnic backgrounds in health research, as compared to available national data. Specifically, Vocal involves more people of Asian, African and Caribbean heritage, and includes a wider range of ages in its PPIE activities. More women than men are involved in Vocal's work. CONCLUSION: Our 'learn by doing' approach to assessing who does and doesn't take part in Vocal's PPIE activities has informed our practice and continues influence our strategic priorities for PPIE. Our system and learning reported here may be applicable and transferable to other similar settings in which PPIE is carried out. We attribute the greater diversity of our public contributors to our strategic priority and activities to promote more inclusive research since 2018.

Patient and public involvement and engagement (PPIE) can improve the relevance, quality, ethics and impact of research thus contributing to high quality research. Currently in the UK, people who get involved in research tend to be aged 61 years or above, White and female. Calls for greater diversity and inclusion in PPIE have become more urgent especially since the COVID-19 pandemic, so that research can better address health inequalities and be relevant for all sectors of society. Yet, there are currently no routine systems or requirements to collect or analyse the demographics of people who get involved in health research in the UK. Vocal is a non-profit organisation which supports PPIE in health research across the region of Greater Manchester in England. Since 2018, one of Vocal's strategic priorities has been to promote inclusive research by diversifying those who are engaged and involved in research, through the development of more inclusive ways of working together, including methods to understand who is (and isn't) currently involved in Vocal's PPIE activities. We find that it's feasible to capture and analyse demographic data related to PPIE. Further, our emerging data indicate that we are involving people from a wider range of ages and with a greater diversity of ethnic backgrounds in PPIE for health research, as compared to available national data. However, similarly to national trends, more women than men are involved in PPIE work.

Adapting Patient and Public Involvement processes in response to the Covid-19 pandemic.

BACKGROUND: The COVID-19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face-to-face consultation may no longer be the dominant method for PPI. METHODS: UK stay-at-home measures announced in March 2020 necessitated immediate revisions to the intended face-to-face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first-hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process. DISCUSSION AND CONCLUSIONS: While concerns have been expressed about the possible limiting effects of forgoing face-to-face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a 'democratising' effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study. PATIENT AND PUBLIC CONTRIBUTION: We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.

Codeveloping and Evaluating a Campaign to Reduce Dementia Misconceptions on Twitter: Machine Learning Study.

Background: Dementia misconceptions on Twitter can have detrimental or harmful effects. Machine learning (ML) models codeveloped with carers provide a method to identify these and help in evaluating awareness campaigns. Objective: This study aimed to develop an ML model to distinguish between misconceptions and neutral tweets and to develop, deploy, and evaluate an awareness campaign to tackle dementia misconceptions. Methods: Taking 1414 tweets rated by carers from our previous work, we built 4 ML models. Using a 5-fold cross-validation, we evaluated them and performed a further blind validation with carers for the best 2 ML models; from this blind validation, we selected the best model overall. We codeveloped an awareness campaign and collected pre-post campaign tweets (N=4880), classifying them with our model as misconceptions or not. We analyzed dementia tweets from the United Kingdom across the campaign period (N=7124) to investigate how current events influenced misconception prevalence during this time. Results: A random forest model best identified misconceptions with an accuracy of 82% from blind validation and found that 37% of the UK tweets (N=7124) about dementia across the campaign period were misconceptions. From this, we could track how the prevalence of misconceptions changed in response to top news stories in the United Kingdom. Misconceptions significantly rose around political topics and were highest (22/28, 79% of the dementia tweets) when there was controversy over the UK government allowing to continue hunting during the COVID-19 pandemic. After our campaign, there was no significant change in the prevalence of misconceptions. Conclusions: Through codevelopment with carers, we developed an accurate ML model to predict misconceptions in dementia tweets. Our awareness campaign was ineffective, but similar campaigns could be enhanced through ML to respond to current events that affect misconceptions in real time.

The benefits of continuing patient and public involvement as part of a randomised controlled trial during the Covid-19 global pandemic

Patient and public involvement (PPI) in clinical research strengthens the quality and relevance of research, and has been crucial to ensure that researchers continue to investigate relevant and important topics during the global Covid-19 pandemic. The MICE (Mental Health Intervention for Children with Epilepsy) randomised controlled trial relies upon PPI to steer the direction and delivery of the trial, and the PPI Research Advisory Group (RAG) adapted to remote online meetings during the pandemic. This article first describes how the PPI RAG supported the research trial during the course of the pandemic, particularly with key trial stages of recruitment, retention and follow-up. It considers how the PPI tasks were adapted to ensure that they remained meaningful throughout this period, particularly for children and young people. Second, the article explores the acceptability of PPI in research using teleconferencing methods, via a co-produced survey of the PPI group members. Survey results indicated that, while participants valued face-to-face meetings, having remote PPI meetings was preferable to having nothing. There was some suggestion that teleconferencing platforms make it challenging for reserved members of the group, and for children, to contribute. Our findings emphasise the importance of continuing PPI even when circumstances are sub-optimal. We hope that our findings will contribute to the wider conversation about what makes PPI effective, particularly in a digital world. [ FROM AUTHOR] Copyright of Research for All is the property of UCL Press and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

Using telepresence robots as a tool to engage patient and family partners in dementia research during COVID-19 pandemic: a qualitative participatory study.

BACKGROUND: Long-term care (LTC) settings have been disproportionately affected by the COVID-19 pandemic; it is important to address unmet needs and explore practical strategies for supporting LTC residents and staff. The involvement of patient partners and family community members in research planning, implementation and evaluation is the basis of Patient and Public Involvement approach and has been challenging during the COVID-19 pandemic, as visitation restrictions have created barriers to conducting research in healthcare settings. Innovative methods and tools are needed for conducting participatory research. This study investigated the use of telepresence as innovative tools for participatory research based on three projects conducted with patient and family partners during the COVID-19 pandemic. METHODS: The data source includes (a) team reflective discussions, (b) weekly meeting notes, (c) field notes, and (d) interviews with ten researchers. We applied purposive sampling to select ten researchers who used a telepresence robot to conduct research in British Columbia, Canada. Semi-structured one-to-one interviews were conducted via Zoom virtual meetings. Patient and family partners contributed to team analysis to identify themes. RESULTS: Analysis of the data produced five themes: (1) Research Enabler, (2) User-Friendly Technology, (3) Increased Engagement, (4) Lack of Infrastructure and Resources, and (5) Training and Technical Obstacles. Based on the results, we propose "ROBOT"-an acronym for five actionable recommendations to support the use of telepresence robots for research. The ROBOT recommendations represent: Realign to adapt, Organize with champions, Blend strategies, Offer timely technical assistance, and Tailor training to individual needs. CONCLUSIONS: This study offers practical insights into the use of telepresence robots as a safe and innovative tool for conducting remote research with people with dementia, even in times of restricted access, as with COVID-19. Future research should apply more creativity and flexibility in adopting technology to expand possibilities for involving people with dementia in research.

It is important to address unmet needs and explore practical strategies for supporting long-term care (LTC) residents and staff who have been disproportionately affected by the COVID-19 pandemic. Involving patient partners and family community members in research planning, implementation, and evaluation is crucial for understanding the challenges faced by LTC residents. However, the restrictions on visitation and staff shortages during the pandemic have made this difficult. This study investigated the use of telepresence robots as innovative tools for participatory research. We interviewed ten researchers who used telepresence robots to conduct remote research in British Columbia, Canada. Semi-structured one-to-one interviews were conducted via Zoom meetings and analyzed to find common themes. Based on the analysis of the interviews and our reflection, five themes were found: (1) Research Enabler, (2) User-Friendly Technology, (3) Increased Engagement, (4) Lack of Infrastructure and Resources, and (5) Training and Technical Obstacles. Based on these findings, we propose "ROBOT"­an acronym for actionable recommendations to support the use of telepresence robots for research. These recommendations include: Realign to adapt, Organize with champions, Blend strategies, Offer timely technical assistance, and Tailor training to individual needs. This study provides insights into the use of telepresence robots as safe and innovative tools for conducting research with patient and family partners remotely, even in times of restricted access, such as during the COVID-19 pandemic.

It's time to 'Build Back Fairer': what can we do to reduce health inequalities in cardiology?

Disparities in cardiovascular morbidity and mortality are among the leading health and social care concerns in the UK. The disruption of the COVID-19 pandemic to health services has further placed cardiovascular care and the respective patient communities at the sharp end, not least in exacerbating existing health inequalities across service interfaces and patients' health outcomes. While the pandemic engenders unprecedented constraints within established cardiology services, it conduces to a unique opportunity to embrace novel transformative approaches within the way we deliver patient care in maintaining best practices during and beyond the crisis. As the first step in navigating toward the 'new norm', a clear recognition of the challenges inherent in cardiovascular health inequalities is critical, primarily in preventing the widening of extant inequalities as cardiology workforces continue to build back fairer. We may consider the challenges through the lens of health services' diverse facets, including the aspects of universality, interconnectivity, adaptability, sustainability, and preventability. This article explores the pertinent challenges and provides a focused narration concerning potential measures to foster equitable and resilient cardiology services that are patient centred in the post-pandemic landscape.

COVID-19 Public Health Measures and Patient and Public Involvement in Health and Social Care Research: An Umbrella Review.

An umbrella review of previously published systematic reviews was conducted to determine the nature and extent of the patient and public involvement (PPI) in COVID-19 health and social care research and identify how PPI has been used to develop public health measures (PHM). In recent years, there has been a growing emphasis on PPI in research as it offers alternative perspectives and insight into the needs of healthcare users to improve the quality and relevance of research. In January 2022, nine databases were searched from 2020-2022, and records were filtered to identify peer-reviewed articles published in English. From a total of 1437 unique records, 54 full-text articles were initially evaluated, and six articles met the inclusion criteria. The included studies suggest that PHM should be attuned to communities within a sociocultural context. Based on the evidence included, it is evident that PPI in COVID-19-related research is varied. The existing evidence includes written feedback, conversations with stakeholders, and working groups/task forces. An inconsistent evidence base exists in the application and use of PPI in PHM. Successful mitigation efforts must be community specific while making PPI an integral component of shared decision-making.

Co-production of a feasibility trial of pacing interventions for Long COVID.

BACKGROUND: The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID. METHODS: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies. RESULTS: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform. CONCLUSION: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.

The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people's health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.

DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome.

BACKGROUND: Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy. METHODS: Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants' saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants' genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology. DISCUSSION: The DecodeME study has been reviewed and given a favourable opinion by the North West - Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online ( www.decodeme.org.uk ). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications.

A framework for implementing Patient and Public Involvement in mental health research: The PATHWAY research programme benchmarked against NIHR standards.

BACKGROUND: Patient and Public Involvement (PPI) in research has become a key component recommended by research commissioners, grant award bodies and specified in government policies. Despite the increased call for PPI, few studies have demonstrated how to implement PPI within large-scale research studies. OBJECTIVE: The aim of the current study was to provide a case example of the implementation of a patient advisory group in a large-scale mental health research programme (PATHWAY) and to benchmark this against UK standards. METHOD: A PPI group was incorporated throughout the PATHWAY research programme, from grant development to dissemination. The group attended regular meetings and supported participant recruitment, evaluated patient-facing documents, supported the piloting of the research intervention and co-developed the dissemination and impact strategy. The implementation of PPI throughout the project was benchmarked against the UK standards for PPI. RESULTS: The inclusion of PPI in the PATHWAY project provided tangible changes to the research project (i.e., improving study documents, co-developing dissemination materials) but also proved to be a beneficial experience to PPI members through the development of new skills and the opportunity to provide a patient voice in research. We show how PPI was involved across seven study phases and provide examples of implementation of the six UK standards. The study did not include PPI in data analysis but met all the UK standards for PPI. Challenges regarding practical components (i.e., meeting frequency, language use), increasing diversity and PPI members' knowledge of research were highlighted as areas for further improvement. CONCLUSIONS: We provide a case example of how PPI can be implemented throughout a research lifecycle and we note the barriers faced and make suggestions for PPI in future implementation and research. PATIENT AND PUBLIC CONTRIBUTION: PPI members were involved throughout the lifecycle of the research programme. The PPI lead was a co-author on the manuscript and contributed to report writing.

Trauma-informed patient and public-engaged research: Development and evaluation of an online training programme.

INTRODUCTION: As patients, members of the public, and professional stakeholders engage in co-producing health-related research, an important issue to consider is trauma. Trauma is very common and associated with a wide range of physical and behavioural health conditions. Thus, it may benefit research partnerships to consider its impact on their stakeholders as well as its relevance to the health condition under study. The aims of this article are to describe the development and evaluation of a training programme that applied principles of trauma-informed care (TIC) to patient- and public-engaged research. METHODS: A research partnership focused on addressing trauma in primary care patients ('myPATH') explicitly incorporated TIC into its formation, governance document and collaborative processes, and developed and evaluated a free 3-credit continuing education online training. The training was presented by 11 partners (5 professionals, 6 patients) and included academic content and lived experiences. RESULTS: Training participants (N = 46) positively rated achievement of learning objectives and speakers' performance (ranging from 4.39 to 4.74 on a 5-point scale). The most salient themes from open-ended comments were that training was informative (n = 12) and that lived experiences shared by patient partners were impactful (n = 10). Suggestions were primarily technical or logistical. CONCLUSION: This preliminary evaluation indicates that it is possible to incorporate TIC principles into a research partnership's collaborative processes and training about these topics is well-received. Learning about trauma and TIC may benefit research partnerships that involve patients and public stakeholders studying a wide range of health conditions, potentially improving how stakeholders engage in co-producing research as well as producing research that addresses how trauma relates to their health condition under study. PATIENT OR PUBLIC CONTRIBUTION: The myPATH Partnership includes 22 individuals with professional and lived experiences related to trauma (https://www.usf.edu/cbcs/mhlp/centers/mypath/); nine partners were engaged due to personal experiences with trauma; other partners are community-based providers and researchers. All partners contributed ideas that led to trauma-informed research strategies and training. Eleven partners (5 professionals, 6 patients) presented the training, and 12 partners (8 professionals, 4 patients) contributed to this article and chose to be named as authors.

A Blueprint for Involvement: Reflections of lived experience co-researchers and academic researchers on working collaboratively.

Patient and public involvement in health research is important to ensure that research remains relevant to the patient groups it intends to benefit. The UK NIHR funded Blueprint study aimed to develop a 'model' of effective service design for children and young people with common mental health problems. To ensure Blueprint's findings were rooted in lived experience and informed by different perspectives, six young adults with lived experience of mental health issues were recruited, trained and employed as co-researchers to work alongside academic researchers . Blueprint collaborated with a third sector partner (McPin) to recruit, employ and mentor the co-researchers and deliver a bespoke training and mentoring package to support their development. Since Blueprint's scheduled work plan was significantly impacted by the Covid-19 pandemic, planned co-researcher activities had to be adapted to accommodate distance learning and remote fieldwork and analysis. Blueprint's co-researchers, academic researchers and a representative of McPin collaboratively used a process of reflexivity and thematic analysis to capture Blueprint's involvement journey. We identified numerous benefits but also challenges to involvement, some of which were exacerbated by the pandemic. Navigating and overcoming these challenges also allowed us to collectively identify key guidelines for involvement for the wider research community which focus on enabling access to involvement, supporting co-researchers and optimising involvement for the benefit of co-researchers and research teams. This paper presents an overview of the Blueprint involvement journey from co-researcher, academic researcher and McPin perspectives, sharing our learning from the recruitment, training, fieldwork and analysis phases in order to inform the knowledge base on lived experience involvement and provide guidance to other researchers who seek to emulate this approach.

The Blueprint study worked with young co-researchers with lived experience to explore services in England and Wales for children and young people with common mental health problems like depression, anxiety and self-harm. Blueprint aimed to find out what services exist, how children, young people and their families find out about and access these services, what the services actually do, and whether they are helpful and offer value for money. Blueprint worked closely with McPin, a charity that works to support young people with lived experience get involved in research. Together we developed a training and mentoring package to support the co-researcher's development and their preparation for the role which included research interviews with service users, parents/carers and service providers and data analysis. The co-researchers, research team and McPin worked together to reflect on the successes and challenges of this approach to research and the challenges of carrying out this work during a global pandemic. We have summarised what we have learnt about how best to enable and support co-researcher involvement to provide guidance to other researchers.

Patient and Public Involvement Online in National Whole-genome Sequencing Project in Japan

The Japanese government developed a national-level whole genome sequencing project in December 2020, which is expected to promote precision medical care for cancer and rare disease patients. Since this is a nationwide project, there is a need for implementing patient and public involvement (PPI). Considering the current COVID-19 pandemic, we conducted online PPI to formulate the contents of the project's informed consent form (ICF) for participation. This online PPI aimed at gaining insights from cancer patients and their family members regarding the ICF. A one-day seminar was conducted online in September 2021, which included three lectures related to the national project, followed by discussion among the attendees divided into two groups based on their age and types of cancer. We had eight attendees who were cancer patients and/or their family members. They discussed the ICF's contents based on the draft developed by the project's research team. Online PPI has its merits and drawbacks. It allows for easier participation and is beneficial for patients who are unable to physically attend either because of their medical condition or geographical location. For the researcher also, it becomes easier to recruit a diverse variety of people who wish to join the PPI activities. In contrast, at times, participants find it difficult to use online devices. Moreover, the attendees may not feel comfortable with the online discussions owing to the lack of nonverbal expression and interactions when compared with personal interaction. For promoting PPIs in the future, we recommend considering the following three crucial aspects:practicing online PPI in a variety of situations, constructing a framework that enables PPI quickly, and promoting diversity in the attendees participating in such PPI activities. Copyright:©2022 the Japanese Society of Clinical Pharmacology and Therapeutics (JSCPT)

The importance of children and young person involvement in scoping the need for a paediatric glucocorticoid-associated patient reported outcome measure.

BACKGROUND: For many children and young people (CYP) with paediatric rheumatic conditions, glucocorticoid medications and their associated side-effects have a substantial impact on disease experience. Whilst there are physician-rated measures of glucocorticoid toxicity, no parallel patient reported measure has been developed to date for CYP with rheumatic disease. This manuscript describes a series of public patient involvement (PPI) events to inform the development of a future paediatric glucocorticoid-associated patient reported outcome measure (PROM). METHODS: One large group PPI event was advertised to CYP with experience of glucocorticoid medication use and their parents through clinicians, charities and existing PPI groups. This featured education on the team's research into glucocorticoid medication and interactive polls/structured discussion to help participants share their experiences. Further engagement was sought for PPI group work to co-develop future glucocorticoid studies, including development of a glucocorticoid associated PROM. Quantitative and qualitative feedback was collected from online questionnaires. The initiative was held virtually due to the Covid-19 pandemic. RESULTS: Nine families (n = 15) including 6 CYP joined the large group PPI event. Online pre-attendance and post-attendance questionnaires showed improvement in mean self-reported confidence [1 = not at all confident, 5 = very confident] in the following: what steroid medications are (pre = 3.9, post = 4.8), steroid side effects (pre = 3.8, post = 4.6), patient-reported outcome measures (pre = 2.0, post = 4.5), available research on steroids (pre = 2.2, post = 3.5). Five families (n = 7) were involved in a monthly PPI group who worked alongside the research team to identify priorities in glucocorticoid research, produce age-appropriate study materials, identify barriers to study participation (e.g. accessibility & convenience) and recommend appropriate modalities for dissemination. The participants found discussing shared experiences and learning about research to be the most enjoyable aspects of the initiative. CONCLUSIONS: This PPI initiative provided a valuable forum for families, including young children, to share their perspectives. Here, the authors explore the effective use of PPI in a virtual setting and provide a unique case study for the involvement of CYP in PROM development. The monthly PPI group also identified a need for the development of a new PROM related to glucocorticoid medication use and provided unique insights into how such a study could be structured.

Comparing Professional and Consumer Ratings of Mental Health Apps: Mixed Methods Study.

BACKGROUND: As the number of mental health apps has grown, increasing efforts have been focused on establishing quality tailored reviews. These reviews prioritize clinician and academic views rather than the views of those who use them, particularly those with lived experiences of mental health problems. Given that the COVID-19 pandemic has increased reliance on web-based and mobile mental health support, understanding the views of those with mental health conditions is of increasing importance. OBJECTIVE: This study aimed to understand the opinions of people with mental health problems on mental health apps and how they differ from established ratings by professionals. METHODS: A mixed methods study was conducted using a web-based survey administered between December 2020 and April 2021, assessing 11 mental health apps. We recruited individuals who had experienced mental health problems to download and use 3 apps for 3 days and complete a survey. The survey consisted of the One Mind PsyberGuide Consumer Review Questionnaire and 2 items from the Mobile App Rating Scale (star and recommendation ratings from 1 to 5). The consumer review questionnaire contained a series of open-ended questions, which were thematically analyzed and using a predefined protocol, converted into binary (positive or negative) ratings, and compared with app ratings by professionals and star ratings from app stores. RESULTS: We found low agreement between the participants' and professionals' ratings. More than half of the app ratings showed disagreement between participants and professionals (198/372, 53.2%). Compared with participants, professionals gave the apps higher star ratings (3.58 vs 4.56) and were more likely to recommend the apps to others (3.44 vs 4.39). Participants' star ratings were weakly positively correlated with app store ratings (r=0.32, P=.01). Thematic analysis found 11 themes, including issues of user experience, ease of use and interactivity, privacy concerns, customization, and integration with daily life. Participants particularly valued certain aspects of mental health apps, which appear to be overlooked by professional reviewers. These included functions such as the ability to track and measure mental health and providing general mental health education. The cost of apps was among the most important factors for participants. Although this is already considered by professionals, this information is not always easily accessible. CONCLUSIONS: As reviews on app stores and by professionals differ from those by people with lived experiences of mental health problems, these alone are not sufficient to provide people with mental health problems with the information they desire when choosing a mental health app. App rating measures must include the perspectives of mental health service users to ensure ratings represent their priorities. Additional work should be done to incorporate the features most important to mental health service users into mental health apps.

Factors impacting participation in research during the COVID-19 pandemic: results from a survey of patients in the ophthalmology outpatient department.

BACKGROUND: Understanding public and patient attitudes to clinical research is paramount to successful recruitment. The COVID-19 pandemic has led to additional hurdles in achieving this. Our aim is to understand the current factors and attitudes towards clinical trial participation in order to assist in recruitment to clinical trials. METHODS: We conducted face-to-face interviews with patients in the outpatient department at a tertiary eye hospital facilitated by a 32-item questionnaire developed by the research team. Patient characteristics were correlated with their responses, in addition to qualitative thematic text analysis. RESULTS: A total of 53 patients were interviewed. Forty per cent indicated that they would be willing to participate in clinical research in the current climate. General motivating factors for involvement in research included personal gain, altruism and contribution to innovation. Factors limiting participation included concerns regarding own safety, inconvenience, accessibility and lack of benefit. 22.6% of participants felt that the COVID-19 pandemic has changed their outlook on research. These were categorised into positive (increased awareness of the importance and need for research, altruism) and negative (increased anxiety, need to minimise exposure to the hospital environment) influences. CONCLUSIONS: Factors influencing patients' decisions to participate in trials are similar to those observed prior to COVID-19 but with an increased focus on the environment the research is conducted in. The COVID-19 pandemic has had positive and negative impacts on patient attitudes towards research. Trial design, with a particular focus on setting and safety measures, in reassuring patients is increasingly important.