Series: Public engagement with research. Part 2: GPs and primary care researchers working inclusively with minoritised communities in health research to help address inequalities.

Public engagement in health research is vital for addressing health disparities and promoting inclusivity among minoritised communities who often face barriers to accessing healthcare. Minoritised communities are groups, which have been made minorities by a dominant culture, race, ethnic group and/or social class and may experience health inequalities as a result. By incorporating diverse perspectives and lived experiences of minoritised communities, this approach aims to achieve contextually relevant research outcomes that reduce health inequalities and improve overall well-being. However, underrepresentation and lack of inclusivity challenges persist, necessitating the establishment of inclusive partnerships and grassroots participatory methodologies.To foster inclusive public engagement, it is important to overcome structural and cultural barriers, address socioeconomic challenges, and build trust with minoritised communities. This can be achieved by promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and collecting rigorous data on engagement demographics for transparency and accountability. Involving minoritised communities in decision-making through participatory research approaches enhances trust and yields successful outcomes. Additionally, allocating sufficient resources, collaborating in co-production, and prioritising the diverse needs and perspectives of stakeholders contribute to fostering inclusive public engagement in research.Overall, inclusive engagement practices particularly in primary care research have the potential to reduce health inequalities and cater to the unique requirements of minoritised communities, thereby creating more impactful outcomes and promoting equitable healthcare access.

There is an important need to engage with minoritised communities in primary care researchEngaging diverse communities in research helps produce relevant research to address health inequalities.The exclusion of minoritised communities from research can be addressed by taking action towards more inclusive engagement.

REPRESENT recommendations: improving inclusion and trust in cancer early detection research.

Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.

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.

Represent: A community engagement roadmap to improve participant representation in cancer early detection research: An Oregon case study.

Introduction: While authentic and sustained community involvement in the research process is critically important to making new technologies and interventions effective and socially acceptable, there is uneven participation across sociodemographic, racial, and ethnic communities in many research areas, including cancer early detection research. Currently, 18% of cancer in the United States impacts Hispanics and Latinos, this population accounts for < 10% of research participants. Understanding barriers and facilitators to cancer early detection research is imperative to the ultimate success of this research. Therefore, the objectives of this study were to: understand Hispanic and Latino community perspectives in participation in cancer early detection research; and identify sustainable and mutually beneficial approaches to community engagement and involvement. Methods: The Oregon Case Study, led by Oregon Health & Science University's Community Outreach, Research and Engagement (CORE) in partnership with colleagues at Vocal, a partnership between Manchester University NHS Foundation Trust and the University of Manchester and Cambridge University, adopted a participatory research approach to better understand participation in cancer early detection research from the perspectives of Oregon's Hispanic and Latino community members. We implemented two evidence-based community engagement models, the Community Engagement Studio and the Community Readiness Assessment Model. Using a facilitated format prescribed by each community engagement model, community members helped us to answer two research questions: (1) What methods help us increase participation of underrepresented communities in cancer early detection research?; and (2) How can we build trust between researchers and underrepresented communities within cancer early detection research? Quantitative (i.e., descriptive statistic) and qualitative (i.e., thematic analysis) analytic methods were used to measure and assess community knowledge, leadership, beliefs, and resources regarding participation in cancer early detection research. Results: A total of 36 Hispanic and Latino community members participated in the two community engagement models. We identified three emergent themes pertaining to participation in cancer early detection research that include: low-level awareness of cancer early detection research and opportunities for research participation, structural barriers to research participation, and uncertainty of the benefits of research participation. Conclusion: Our approach, using two evidence-based community engagement models, yielded valuable insights about perceptions of research participation for Hispanic and Latino community members. These findings, synthesized into three key themes, led to actionable recommendations to increase research participation.

Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups-practical guidance to support better practice.

Randomised trials, especially those intended to directly inform clinical practice and policy, should be designed to reflect all those who could benefit from the intervention under test should it prove effective. This does not always happen. The UK National Institute for Health and Care Research (NIHR) INCLUDE project identified many groups in the UK that are under-served by trials, including ethnic minorities.This guidance document presents four key recommendations for designing and running trials that include the ethnic groups needed by the trial. These are (1) ensure eligibility criteria and recruitment pathway do not limit participation in ways you do not intend, (2) ensure your trial materials are developed with inclusion in mind, (3) ensure staff are culturally competent and (4) build trusting partnerships with community organisations that work with ethnic minority groups. Each recommendation comes with best practice advice, public contributor testimonials, examples of the inclusion problem tackled by the recommendation, or strategies to mitigate the problem, as well as a collection of resources to support implementation of the recommendations.We encourage trial teams to follow the recommendations and, where possible, evaluate the strategies they use to implement them. Finally, while our primary audience is those designing, running and reporting trials, we hope funders, grant reviewers and approvals agencies may also find our guidance useful.

"We are not hard to reach, but we may find it hard to trust" . Involving and engaging 'seldom listened to' community voices in clinical translational health research: a social innovation approach.

BACKGROUND: Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus address issues of health equity. Several recent reports, however, indicate that public involvement is exclusive, including in its interactions with ethnic groups. This paper outlines a novel community-led methodology - a community sandpit - to address the inclusion of ethnic groups in public involvement in research, reports on its evaluation, findings, legacy and impact. METHODS: Through detailed planning - thinking through and taking into account all stakeholders perspectives in the planning and design of the sandpit, relationship-building, co-design and co-delivery between the Public Programmes team based at Manchester University NHS Foundation Trust and the Greater Manchester Black and Minority Ethnic Network - the community sandpit was held in July 2018. RESULTS: Fifteen community organisations took part in the two-day event, as well as six researchers, and six creative practitioners. Six community-based partnership projects were seed-funded; four of these received additional funding from other sources also. CONCLUSIONS: Evaluation of the sandpit showed the format to be well-received by all: it levelled power relationships between community organisations, health researchers and research infrastructure; it developed capacity amongst researchers about the accessibility, role and potential of community organisations. Described as "not another community seed fund" by community partners, the sandpit offered community partners, equitable avenues for collaboration within Greater Manchester translational research and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group (BRAG Vocal Website information, - https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/ , 2021). The method has the potential to be replicated elsewhere to support inclusive public involvement in research and inclusive research.

Public involvement in "bench to bedside" research (from laboratory-based research to clinical practice) is increasingly recognised as essential for relevant and reliable research. To enable the findings from health research to meet the needs of those who stand to benefit from it the most and to ensure that differences in health and disease are reduced as much as possible, public involvement must be diverse and inclusive. Recent reports, however, indicate that public involvement is exclusive, including in its interactions with racially minoritised groups. This paper outlines a novel community-led methodology ­ a community sandpit ­ to address the inclusion of ethnic groups in public involvement in research, reports on its evaluation, findings, legacy and impact.Through detailed planning ­ thinking through and taking into account all stakeholders perspectives in the planning and design of the sandpit, relationship-building, co-design and co-delivery between the Public Programmes Team (now Vocal) based at Manchester University NHS Foundation Trust worked with the Greater Manchester Black and Minority Ethnic Network - the community sandpit was held in July 2018. Fifteen community organisations took part in the two-day event, as well as six researchers, and six creative practitioners (artists with experience of working with the public on socially engaged projects to engage them in areas such as science). Six community-based partnership projects were seed-funded; four of these received additional funding from other sources. Evaluation of the sandpit showed the format to be well-received by all: it levelled power relationships between community organisations, health researchers and research infrastructure; it increased researchers knowledge and insights about the accessibility of community organisations and of how they might work effectively with them. Described as "not another community seed fund" by community partners, the sandpit began the process of levelling the playing field for collaboration between Greater Manchester translational research and local community organisations and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group (BRAG) (Vocal Website information, - https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/ , 2021). The method has the potential to be repeated elsewhere to support inclusive public involvement in research and inclusive research.

Impact of involving people with dementia and their care partners in research: a qualitative study.

OBJECTIVES: We aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme. DESIGN: We used monitoring forms to record the impact of the research programme's PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI. SETTING: We evaluated Research User Groups (RUGs-older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites. PARTICIPANTS: We purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work. RESULTS: Impact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia. CONCLUSIONS: PPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

Evaluation of a research awareness training programme to support research involvement of older people with dementia and their care partners.

BACKGROUND: Best-practice guidelines recommend that appropriate support be provided to public contributors to facilitate their involvement in research. One form of support is research awareness training. Older people with dementia and care partners were involved in four Research User Groups (RUGs) in the UK, France, Cyprus and Greece. We delivered research awareness training (RAT) to the RUGs. The aim of this study was to evaluate the acceptability and perceived outcomes of the training from the perspective of RUG members. METHODS: At the end of each research training session, participants completed the Training Acceptability Rating Scale-section 2, which records the respondent's impressions of the training process and the outcomes of training. Participants were also invited to take part in semi-structured interviews at the end of the programme. RESULTS: Thirty-four RUG members completed the TARS-section 2 with 23 completing semi-structured interviews. Over two-thirds (67%) of participants rated their overall satisfaction with the RAT 'a great deal'. Qualitative responses indicated that participants found group work to be beneficial for learning, the structure of training activities and topics covered appropriate. The type and format of the training materials were viewed as helpful, and they valued the new knowledge gained. CONCLUSIONS: The training contents were applicable, useful and relevant to the participants' role within the research. We highlight the importance of facilitating participation by (a) fostering awareness of relevant research issues and (b) tailoring delivery of training according to the needs of the participants.

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project.

PLAIN ENGLISH SUMMARY: Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM - Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English. ABSTRACT: Background Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of PPI in EuroTEAM, formatively assess the impact of PPI from the perspectives of researchers and patient research partners (PRPs), reflect on successes and lessons learned, and formulate recommendations to guide future projects.Methods Two mixed-methods surveys (for PRPs and researchers) and a teleconference were undertaken to assess the impact of PPI on individual work packages and on EuroTEAM overall.Results There was consensus about the positive impact of PPI on the research and on the experiences of those involved. In particular, the positive impact of PPI on the personal development of researchers, and on effective public engagement with EuroTEAM research were highlighted. Researchers described adapting their practice in future projects to facilitate PPI. Spin-off projects and ongoing collaborations between PRPs and researchers reflected the value of PPI to participants. PPI was more frequently integrated in psychosocial research, though examples of PPI in laboratory/translational science were also described. PRPs asked for more opportunities to contribute meaningfully to basic scientific research and for more extensive feedback on their contributions.Conclusions The findings were used to formulate recommendations to guide effective involvement of patients in future similar projects, including identifying specific training requirements for PRPs and researchers, the identification of PRP focused tasks/deliverables at the project planning stage, and supporting access to involvement for all PRPs. Importantly, the distinctive multidisciplinary approach of EuroTEAM, incorporating both basic science and psychosocial research, facilitated patient involvement in the project overall.

Innovating public engagement and patient involvement through strategic collaboration and practice.

BACKGROUND: Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. METHODS: This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice - a 'cycle' of engagement and involvement - innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. RESULTS: Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. CONCLUSIONS: Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice - the 'cycle' of engagement and involvement - is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

Patient and public involvement in dementia research in the European Union: a scoping review.

BACKGROUND: Internationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process. METHODS: Relevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently. Eligibility criteria for included studies were: (i) people living with dementia and/or care partners; (ii) PPI activity in dementia research conducted in the European Union (EU); and (iii) published between 2000 and 2018. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2 SF) was used to collate the data. There was no language restriction other than the abstract needed to be available in English. RESULTS: We found 19 studies from the UK and one from the Netherlands meeting inclusion criteria. No studies from other EU countries met inclusion criteria. Studies reported various methods of PPI including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach. The reported aims of PPI included identifying and prioritising research questions (n = 4), research design (n = 5), undertaking and managing research (n = 8), and data analysis and interpretation (n = 3). All PPI related to design and implementation of non-pharmacological studies. One study described two pharmacological studies as case studies incorporating PPI. Seventeen studies reported anecdotal impacts of PPI. CONCLUSIONS: Further development of PPI in dementia research in the EU and in pharmacological dementia research is required. Given the wide range of objectives of PPI in dementia research, PPI methods should be flexible and appropriate for the research context. Researchers should also formally evaluate and report the impacts of PPI for researchers, patients and the general public using good quality research designs to foster development of the field and enable the benefits and challenges of PPI to be better understood. TRIAL REGISTRATION: PROSPERO 2017: CRD42017053260 .

A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.

PLAIN ENGLISH SUMMARY: Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research.This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or vision impairment in a European research project investigating the combined impact of dementia with hearing and/or vision impairment. We set up four Research User Groups (RUGs) of older people with dementia with age-related hearing and/or vision impairment and their carers based in the UK, France, Cyprus and Greece to advise our researchers. We provided training to group members to support their input to the research.We will use a questionnaire and interview people in our RUGs to understand what they thought of the training and their experiences of being part of the RUG. We will also interview researchers to understand if they thought the advice from the groups was useful.This study will help us to understand how to effectively involve older people with dementia and age-related hearing and/or vision impairment in research and what the benefits of involving older people with dementia in research are. ABSTRACT: Background Research to prevent and treat dementia is an international priority. Involvement of older people with dementia in the research is important to ensure the relevance and utility of the research outcomes in clinical practice to them. Efforts to involve such people in research are growing due to increased recognition of the usefulness of incorporating the views of older people with dementia into the research process. Research User Groups (RUGs) of older people with dementia and carers for people with dementia were set up in UK (Manchester), France (Nice), Cyprus (Nicosia) and Greece (Athens) to advise on the research. We report a protocol for a study which aims to evaluate i) the perceptions of RUG members of the usefulness of Research Awareness Training that was provided to support their involvement in the research and ii) perceived impacts of the involvement of older people with dementia and age-related hearing and/or vision impairment on research from the point of view of RUG members and researchers. Methods Both qualitative and quantitative methods will be used to evaluate the acceptability, appropriateness and satisfaction with Research Awareness Training and the perceived impact of involvement of RUGs on research. Focus groups interviews with RUG members and one to one interviews with both RUG members (n = 24) and researchers (n = 6) will be conducted to understand the perceived impacts of patient and public involvement on research from the point of view of older people with dementia, carers and researchers. Any comparative differences in cultural, attitudinal and environmental differences between RUGs in outcomes of training and impact across the four European sites will be reported. Discussion This study is unique in its exploration of the impact of the involvement of older people with dementia and age-related hearing and/or vision impairment in a large multi-site European dementia research study. This work will be crucial in informing understanding of how to effectively involve older people with dementia and age-related hearing and/or vision impairment and carers in dementia research to ensure research addresses the needs and priorities of older people with dementia and age-related hearing and/or vision impairment.

Diversifying audiences and producers of public involvement in scientific research: the AudioLab.

PLAIN ENGLISH SUMMARY: A partnership between a public engagement specialist, and a director of a digital radio station working towards social change, The AudioLab is a creative and innovative way to support diverse young people to connect with and get actively involved in health research. We worked with 25 creative young adults at relative socioeconomic, educational and/or health disadvantage in 2016 and 2017. Facilitated by the project leads, the emerging young talents connected with science in a series of culturally- and personally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, which reached at least 2324 people online. As a result of taking part in The AudioLab, the young adults felt more confident about themselves and about science; they could see a role for their creative talents in science communication, and felt able to become actively involved in health research. After the project, the ongoing partnership between the project leads and the young adults helped 12 of the participants to progress to employment, training and voluntary roles within health, research, creative and communications environments. We believe that the AudioLab presents a way of working that takes a step towards greater diversity and inclusion among both the audiences and producers of public involvement in health research. It has the potential to be reproduced as a method in other locations. ABSTRACT: Background The AudioLab is an innovative way to support greater inclusion in public engagement and involvement in health research. A partnership between a public engagement with research specialist, and a director of a digital radio station working towards social change, The AudioLab piloted an approach working with young people at relative socioeconomic, educational and/or health disadvantage to engage and involve them meaningfully, and sustainably, with health science and research. Methods Twenty-five young adults from diverse backgrounds took part in AudioLab pilots in 2016 and 2017. Facilitated by the project leads, they engaged with science in a series of culturally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, the latter reaching at least 2324 people online. Results Young adults' agency within health research and science engagement was increased, with 12 of the participants progressing to roles within health, research, creative and communications environments. Conclusions Through partnership working between the project leads, co-production of creative outputs by the young people with scientists and science communicators, and a 'reimagining' of the positive assets that diverse young adults bring to engagement with health research, the AudioLab presents a way of working that takes a step towards greater diversity and inclusion among both the audiences and producers of public involvement in health research. Further, the AudioLab has the potential to be reproduced as a method in other locations.

What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study.

BACKGROUND: Involving people of all ages in health research is now widely advocated. To date, no studies have explored whether and how young people with chronic rheumatic conditions want to be involved in influencing health research. This study aimed to explore amongst young people with rheumatic conditions, 1) their experiences of research participation and involvement 2) their beliefs about research involvement and 3) beliefs about how young people's involvement should be organized in the future. METHODS: Focus groups discussions with young people aged 11-24 years with rheumatic conditions across the UK. Data was analysed using a qualitative Framework approach. RESULTS: Thirteen focus groups were held involving 63 participants (45 F: 18 M, mean age 16, range 10 to 24 years) across the UK. All believed that young people had a right to be involved in influencing research and to be consulted by researchers. However, experience of research involvement varied greatly. For many, the current project was the first time they had been involved. Amongst those with experience of research involvement, awareness of what they had been involved in and why was often low. Those who had previously participated in research appeared more positive and confident about influencing research in the future. However, all felt that there were limited opportunities for them to be both research participants and to get involved in research as public contributors. CONCLUSIONS: These findings suggest that there is an on-going need to both increase awareness of research involvement and participation of young people in rheumatology as well as amongst young people themselves.

What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study.

BACKGROUND: The involvement of people of all ages including young people in research is now widely advocated but prioritisation of research topics is still driven largely by professional agendas. Evidence from adult literature has reported a mismatch between a researcher and patient generated list of research topics. There have been no studies to date exploring the priorities of young people with long term conditions other than in SLE. The study aimed to explore the research priorities of young people across the UK with respect to rheumatic conditions. METHODS: Focus groups were undertaken with young people aged 11-24 years with rheumatic conditions recruited across the UK via members of the Barbara Ansell National Network for Adolescent Rheumatology BANNAR and relevant national charities. Data was analysed using a Framework approach. Participants discussed their beliefs about what should be researched in: Basic Science; Clinical Medicine; Health Services, Psychosocial, and Public Health. They were then invited to prioritize these areas in terms of how much funding they should receive. RESULTS: Thirteen focus groups were held involving 63 participants (18 males: 45 females, mean age 16 years, range 10 to 24) in all four nations of the UK. Young people's research priorities were influenced by whether they felt research would achieve benefits for all or just some patients and long or short term goals. Another influence was whether participants felt that research areas were already well funded. Across all groups, Basic Science was a key priority and participants felt that psychosocial research should be prioritized more. Health Services Research was a lower priority, as the majority of participants were happy with their care. Clinical medicine was not a high priority as young people were happy with their medication or uncomfortable with trying new ones. Finally, for nearly all groups, Public Health was a low priority. Differences were also observed between the two age groups and across the geographically diverse focus groups. CONCLUSION: Understanding young people's research priorities is important to develop research that is in tune with their needs. The results highlight the importance of considering the whole age range of adolescence and young adulthood as well as geographical diversity. The findings from this work will inform the future research of the Barbara Ansell National Network for Adolescent Rheumatology BANNAR in the UK.

What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study.

OBJECTIVES: To explore European-based pharmaceutical industry professionals' beliefs about patient and public involvement (PPI) in medicines research and development (R&D). SETTING: Pharmaceutical companies in the UK, Poland and Spain. PARTICIPANTS: 21 pharmaceutical industry professionals, four based in the UK, five with pan-European roles, four based in Spain and eight based in Poland. METHOD: Qualitative interview study (telephone and face-to-face, semistructured interviews). All interviews were audio taped, translated (where appropriate) and transcribed for analysis using the Framework approach. RESULTS: 21 pharmaceutical industry professionals participated. Key themes were: beliefs about (1) whether patients and the public should be involved in medicines R&D; (2) the barriers and facilitators to PPI in medicines R&D and (3) how the current relationships between the pharmaceutical industry, patient organisations and patients influence PPI in medicines R&D. CONCLUSIONS: Although interviewees appeared positive about PPI, many were uncertain about when, how and which patients to involve. Patients and the public's lack of knowledge and interest in medicines R&D, and the pharmaceutical industry's lack of knowledge, interest and receptivity to PPI were believed to be key challenges to increasing PPI. Interviewees also believed that relationships between the pharmaceutical industry, patient organisations, patients and the public needed to change to facilitate PPI in medicines R&D. Existing pharmaceutical industry codes of practice and negative media reporting of the pharmaceutical industry were also seen as negative influences on these relationships.

Patient involvement in a qualitative meta-synthesis: lessons learnt.

PLAIN ENGLISH SUMMARY: Patients and researchers must work together to improve the relevance and quality of research. Qualitative systematic reviews synthesise findings from a range of published qualitative studies to identify common themes, and can make recommendations for practice or future research. The process of conducting a systemic review offers multiple opportunities for patient involvement.This paper explores the reflections of patient research partners involved in a qualitative systematic review. Patient partners were asked how their experience of the review process could be used to improve patient involvement in future qualitative systematic reviews. Following involvement in a systematic review an exploratory questionnaire was emailed to eight patient research partners. Open ended questions focussed on the training they had received, whether they had enjoyed taking part and how the process could be improved. Patients stated that they needed clear instructions and examples of how to take part in the systematic review. Face to face training was preferred, and it was important that patients were given enough time to complete the task. The study led to benefits for patients including gaining new skills and improved confidence. Each patient also wanted to know how their comments had influenced the paper and wanted feedback on whether they needed any further training. Through reflection with patient partners, recommendations for the involvement of patients in qualitative systematic reviews were developed to allow researchers to successfully involve patients in the review process. ABSTRACT: Background Patient involvement in systematic reviews is seen as good practice, yet there is a lack of accessible standardised training for those involved. The aim of this paper is to inform the evidence base on effective ways of involving patients in a qualitative meta-synthesis. This process is evaluated and reflected by patient research partners (PRPs) who provided accounts of their experience. Methods An open ended questionnaire was emailed to eight PRPs who had participated in the analysis of a qualitative meta-synthesis. Questions focussed on the training they received, their experience of coding data and identifying themes, whether they enjoyed taking part in the project and how the process could be improved. Results Our findings point to the importance of detailed training for PRPs, using plain English and clear examples of analysis techniques to improve confidence in engaging with meta-synthesis methods. Face to face training was preferred in order to discuss a PRP's understanding of the task ahead. Time is an important consideration as PRPs often complete this work on top of their daily commitments and need the time and on-going support to be able to immerse themselves in the data. A focus group was a useful way to discuss the themes but it is important that PRPs understand how their comments have influenced the paper. PRPs reported benefits that included building new skills, improving confidence and gaining knowledge. They also asked for feedback on their contribution and any further training needs. All PRPs said they would take part in a meta-synthesis in the future as long as these considerations were addressed. Conclusion The recommendations for practice identified in this paper, and guidelines for training, can assist researchers in collaborating with PRPs when developing and conducting a qualitative meta-synthesis.