Search

Introduction: Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. Methods: Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. Findings: Fifty‐two ethnic minority members were engaged in group interviews and one‐to‐one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word‐of‐mouth. The main health and social care concerns were chronic long‐term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long‐term health conditions, health promotion and education, early care interventions and understanding community needs. Interpretation: Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. Patient or Public Contribution: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development. [ABSTRACT FROM AUTHOR]

Introduction: Ensuring adequate representation and the active, meaningful and visible involvement of groups likely to be most impacted by research findings and/or the lack of research inquiry are increasingly acknowledged. This is particularly relevant for Black racially minoritised groups who are less visible as research participants and in patient and public involvement and engagement (PPIE) roles. Our viewpoint article sought to discuss reflections and insights on their involvement experience, with particular attention to perceived barriers and enablers to PPIE involvement. Methods: Qualitative data were collected as part of facilitated group discussions from nine Black racially minoritised experts‐by‐experience involved in a PPIE advisory group. Data were subjected to thematic analysis to identify key themes. Results: Five main themes were identified that reflected factors linked to practicalities: role unfamiliarity, benefits for the larger community, acknowledgement of previous harm and mental health stigma. Conclusion: Given the existence and importance of the direct links between research and service and treatment innovations in health and social care, ensuring that those from underrepresented Black racial communities are meaningfully and equitably supported to have roles in advising and influencing research programmes should be prioritised and an ongoing consideration for different stakeholders, including research funders, researchers, healthcare providers and community leaders/representatives. Patient or Public Contribution: This viewpoint article is a collaboration between lived experience stakeholders and researchers, comprising conceiving the original idea for the paper, its conceptualisation and data generation and the coproduction including editing of the manuscript. [ABSTRACT FROM AUTHOR]

Abstract Introduction Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. Methods Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. Findings Fifty‐two ethnic minority members were engaged in group interviews and one‐to‐one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word‐of‐mouth. The main health and social care concerns were chronic long‐term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long‐term health conditions, health promotion and education, early care interventions and understanding community needs. Interpretation Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. Patient or Public Contribution Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.

Abstract Introduction Ensuring adequate representation and the active, meaningful and visible involvement of groups likely to be most impacted by research findings and/or the lack of research inquiry are increasingly acknowledged. This is particularly relevant for Black racially minoritised groups who are less visible as research participants and in patient and public involvement and engagement (PPIE) roles. Our viewpoint article sought to discuss reflections and insights on their involvement experience, with particular attention to perceived barriers and enablers to PPIE involvement. Methods Qualitative data were collected as part of facilitated group discussions from nine Black racially minoritised experts‐by‐experience involved in a PPIE advisory group. Data were subjected to thematic analysis to identify key themes. Results Five main themes were identified that reflected factors linked to practicalities: role unfamiliarity, benefits for the larger community, acknowledgement of previous harm and mental health stigma. Conclusion Given the existence and importance of the direct links between research and service and treatment innovations in health and social care, ensuring that those from underrepresented Black racial communities are meaningfully and equitably supported to have roles in advising and influencing research programmes should be prioritised and an ongoing consideration for different stakeholders, including research funders, researchers, healthcare providers and community leaders/representatives. Patient or Public Contribution This viewpoint article is a collaboration between lived experience stakeholders and researchers, comprising conceiving the original idea for the paper, its conceptualisation and data generation and the coproduction including editing of the manuscript.

Abstract Background There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. Objective To describe how our qualitative study, exploring young peoples’ perceptions on the feasibility of using technology to detect mental health deterioration, was co‐produced using principles of co‐production, whilst reflecting on impact, challenges and recommendations. Methods Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co‐production. Reflections from researchers and young people were collected throughout. Results Seven young people formed an initial Young People's Advisory Group (YPAG); three became co‐researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision‐making. The resulting co‐produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. Conclusions To our knowledge, this is the first qualitative mental health study to be co‐produced using the principles of co‐production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co‐produced future research. Although co‐production takes time, it makes significant impact to the research, researchers and co‐researchers. Flexible funding for spontaneous suggestions from co‐researchers and more time for interview training is recommended.

Background: There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. Objective: To describe how our qualitative study, exploring young peoples' perceptions on the feasibility of using technology to detect mental health deterioration, was co‐produced using principles of co‐production, whilst reflecting on impact, challenges and recommendations. Methods: Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co‐production. Reflections from researchers and young people were collected throughout. Results: Seven young people formed an initial Young People's Advisory Group (YPAG); three became co‐researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision‐making. The resulting co‐produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. Conclusions: To our knowledge, this is the first qualitative mental health study to be co‐produced using the principles of co‐production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co‐produced future research. Although co‐production takes time, it makes significant impact to the research, researchers and co‐researchers. Flexible funding for spontaneous suggestions from co‐researchers and more time for interview training is recommended. [ABSTRACT FROM AUTHOR]

Abstract Background Singapore is becoming a world‐class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies. Objective To explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore. Design Semi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis. Results Whilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio‐political environment and prevailing social and professional hierarchies. They also identified asset‐based strategies to overcome these, in particular, a more community‐oriented approach. Conclusion The cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities.

Background: Singapore is an international research hub, with an emphasis on translational clinical research. Despite growing evidence of the positive impact of public involvement (PPI) in research, it remains rare in Singapore. Aims: To investigate Singaporean public perspectives around the rationale, role and scope for being involved in health researchTo identify the potential, challenges, facilitators and strategies for implementing PPI in Singapore. Design: Semi‐structured qualitative interviews with members of the public, analysed using thematic framework analysis. Results: Twenty people participated. Four main themes emerged: potential benefits; challenges; facilitators; and strategies for implementation. Whilst initially unfamiliar with the concept, all interviewees recognized potential benefits for the research itself and those involved, including researchers. PPI was seen to offer opportunities for public empowerment and strengthening of relationships and understanding between the public, academics and health professionals, resulting in more impactful research. Challenges included a Singaporean culture of passive citizenship and an education system that inculcates deferential attitudes. Facilitators comprised demographic and cultural changes, including trends towards greater individual openness and community engagement. Implementation strategies included formal government policies promoting involvement and informal community‐based collaborative approaches. Conclusion: Given the socio‐political framework in Singapore, a community‐based approach has potential to address challenges to PPI and maximize impact. Careful consideration needs to be given to issues of resource and support to enable members of the public to engage in culturally sensitive and meaningful ways that will deliver research best placed to effectively address patient needs. [ABSTRACT FROM AUTHOR]

Background: Singapore is becoming a world‐class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies. Objective: To explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore. Design: Semi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis. Results: Whilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio‐political environment and prevailing social and professional hierarchies. They also identified asset‐based strategies to overcome these, in particular, a more community‐oriented approach. Conclusion: The cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities. [ABSTRACT FROM AUTHOR]

Background: People subject to the criminal justice system often have substantially different life‐experiences from the general population. Patient and public involvement (PPI) of "seldom heard" groups provides valuable experiential knowledge, enhancing research. Objective: To share our jointly developed techniques to ensure the meaningful engagement and contribution of people with lived experience of the criminal justice system (PWLECJS) in research, trial science, intervention theory development and dissemination. Methods: Commitment to adequate financial resources, appropriate staff skills and adequate time were combined with previous learning. PWLECJS were approached through local community organizations. A group was established and met fortnightly for ten months in an unthreatening environment and had a rolling membership. Ongoing engagement was promoted by the group taking responsibility for the rules, interactive and accessible activities, feeding back tangible impacts, ongoing contact, building a work ethic, joint celebrations, sessions with individual academic researchers and pro‐actively managed endings. Results: The Peer Researchers contributed to study documents, training academic researchers, research data collection and analysis, intervention delivery and theory development and trial science. The Peer Researchers gained in confidence and an improved sense of self‐worth. The Academic Researchers gained skills, knowledge and an increased openness to being challenged. Discussion and conclusions: PWLECJS can be meaningful included in health research and intervention development. The key elements required are listed. Challenges included differences in priorities for timescales and dissemination, resource limitations and the use of Peer Researchers' names. Further research is required to understand what might be of relevance for other "seldom heard" groups. [ABSTRACT FROM AUTHOR]

Abstract: Background: A significant challenge in Patient and Public Involvement and Engagement (PPIE) in health research is to include a wide range of opinions and experiences, including from those who repeatedly find themselves at the margins of society. Objective: To contribute to the debate around PPIE by introducing a bottom‐up methodology: cultural animation (CA). Cultural Animation is an arts‐based methodology of knowledge co‐production and community engagement which employs a variety of creative and participatory exercises to help build trusting relationships between diverse participants (expert and non‐experts) and democratize the process of research. Design: Three CA full‐day workshops for the research project “A Picture of Health.” Participants: Each workshop was attended by 20‐25 participants including 4 academics, 5 retired health professionals who volunteered in the local community and 15 community members. Participants ranged in age from 25 to 75 years, and 80% of the participants were women over the age of 60. Results: The CA workshops unearthed a diversity of hidden assets, increased human connectivity, led to rethinking of and co‐creating new health indicators and enabled participants to think of community health in a positive way and to consider what can be developed. Discussion: Cultural animation encourages participants to imagine and create ideal pictures of health by experimenting with new ways of working together. Conclusion: We conclude by highlighting the main advantages to PPIE as follows: CA provides a route to co‐produce research agendas, empowers the public to engage actively with health professionals and make a positive contribution to their community. [ABSTRACT FROM AUTHOR]

Background There is a growing literature on evaluating aspects of patient and public involvement ( PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. Aim We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. Methods We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. Results The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. Discussion The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future. [ABSTRACT FROM AUTHOR]

Background Newspaper stories can impact behaviours, particularly in relation to research participation. It is therefore important to understand the narratives presented and ways in which these are received. Some work to date assumes journalism transmits existing medical knowledge to a passive audience. This study aimed to explore how newspaper articles present stories about medical research and how people interpret and use them. Design Qualitative research methods were employed to analyse two data sets: newspaper articles relating to 'rheumatoid arthritis' and 'research' from UK local and national news sources; and existing transcripts of interviews with patients with rheumatoid arthritis and their carers. Results Newspapers present a positive account of medical research, through a simple narrative with three essential components: an 'innovation' offers 'hope' in the context of 'burden'. Patients frequently feature as passive subjects without attributed opinions. Few articles include patients' experiences of research involvement. Patients with rheumatoid arthritis and their carers read articles about medical research critically, often with cynicism and drawing on other sources for interpretation. Conclusions An understanding of the simple, positive narrative of medical research found in newspaper articles may enable researchers to gain mass media exposure for their work and challenge this typical style of reporting. The critical and cynical ways patients and carers read stories about medical research suggest that concerns about newspaper articles misinforming the public may be overstated, but any effect on research engagement is unknown. Newspaper articles rarely present patients' views or their experiences of research, and this can be conceptualized as 'depersonalization bias'. [ABSTRACT FROM AUTHOR]

Objectives To characterise the literature on public involvement in health research published between 1995 and 2009. Methods Papers were identified from three systematic reviews, one narrative review and two bibliographies. The analysis identified journals where papers were published; countries of lead authors; types of public involved; health topic areas; and stages of research involving the public. Papers were also classified as to whether they were literature reviews or empirical studies; focused on participatory/action research; were qualitative, quantitative or mixed-method. The number of papers published per year was also examined. Findings Of the 683 papers identified, 297 were of USA origin and 223 were of UK origin. Of the 417 empirical papers: (i) participatory/action research approach was dominant, together with qualitative data collection methods; (ii) the stage of research the public was most involved was question identification; (iii) indigenous groups were most commonly involved; (iv) mental health was the most common health topic. Published studies peaked in 2006. Conclusions The present study identifies publication patterns in public involvement in health research and provides evidence to suggest that researchers increasingly are 'walking the walk' with respect to public involvement, with empirical studies consistently out-numbering literature reviews from 1998. [ABSTRACT FROM AUTHOR]