Regional Working in the East of England: Using the UK National Standards for Public Involvement

Plain English summary: Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors.The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study.Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes.The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research. Abstract: Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors' final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections. Conclusions To our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.Peer reviewedFinal Published versio

Enhancing the Employability of Humanities Postgraduates: a Students as Academic Partners Project Report

In an increasingly competitive employment market, postgraduates need to demonstrate more than the ‘skills, knowledge, attitudes and experiences that are closely associated with the research process’ (Golovushkina & Milligan, 2013: 199). Yet results indicate that Worcester postgraduate students remain unaware of the full range of opportunities that exist alongside postgraduate study, and how this affects their subsequent employability. This research, undertaken with humanities post-graduate students at University of Worcester, aims to contribute to discussions about how to enhance the employability of humanities postgraduates through extra-curricular activities. The project was implemented as a Students -As-Partners-in-Learning-Project, using action research; the issue was identified, base-line data collected and this resulted in the creation of a postgraduate blog incorporating suggestions of possible opportunitie s and links to relevant websites for further information. Informed by this research, the student partners then took active roles in the organization of the Women’s History Network National Conference, ‘Home Fronts: Gender, War and Conflict’, hosted at the University of Worcester in September 2014, to broaden their existing skills base and then to connect this involvement to their professional development through a group CV review. The participants’ own experiences of wider engagement can therefore illuminat e new ways for understanding employability in relation to humanities postgraduate students

The Differential Impact of Learning Experiences on International Student Satisfaction and Institutional Recommendation

This research uses data from i-graduate's International Student Barometer to investigate the impact of student learning experiences on institutional satisfaction and recommendation for degree-seeking international students. Analyses revealed that evaluations – i.e., how satisfied students are with their experience – are influenced by different learning experience variables from those that impact behavioral intentions – i.e., their willingness to recommend the institution. This study finds that, within the learning experience, 'teaching' variables (e.g., "quality of lectures", "expertise of faculty") mattered most for overall satisfaction, while 'study' variables that often center on later employment (e.g., "employability skills", "work experience during studies") predicted the propensity to recommend an institution. In addition, results demonstrated that what students value, in terms of their learning experience, varies significantly when student nationality and destination country are considered. Implications for international educators and researchers are discussed

Guidelines for human gene nomenclature.

Standardized gene naming is crucial for effective communication about genes, and as genomics becomes increasingly important in healthcare, the need for a consistent language for human genes becomes ever more vital. Here we present the current HUGO Gene Nomenclature Committee (HGNC) guidelines for naming not only protein-coding but also RNA genes and pseudogenes, and outline the changes in approach and ethos that have resulted from the discoveries of the last few decades.National Human Genome Research Institute (NHGRI) grant U24HG003345 (1.5.2018-30.4.-2023) Wellcome Trust grant 208349/Z/17/Z (1.9.2017-31.8.2022

“Drunk People Are on a Different Level”: A Qualitative Study of Reflections From Students About Transitioning and Adapting to United Kingdom University as a Person Who Drinks Little or No Alcohol

Background: Though sobriety in young people is on the rise, students who drink little or no alcohol may experience social exclusion at University, impacting well-being. We aim to understand the social experiences of United Kingdom (UK) undergraduate students who drink little or no alcohol. Methods: A mixed-methods study using semi-structured, one-to-one interviews and the 24-Item Social Provisions Scale and Flourishing Scale with 15 undergraduate students who drink little or no alcohol. Descriptive statistics are presented for quantitative data and thematic analysis for qualitative. Results: Eight main themes and four subthemes were generated from thematic analysis summarised in two sections ‘views of drinkers from non-drinkers’ and ‘how peer pressure feels and how people deal with it.’ The initial transition to University represented a challenge, where participants struggled to find their ‘true’ friends. However, students generally had high levels of social provision, well-being and enjoyed close friendships with fewer casual acquaintances. All students experienced some kind of peer pressure (of a varying extremity) and developed coping strategies when in social situations involving alcohol. Fear of missing out on the ‘typical’ University experience heightened self-imposed expectations to drink. Despite participants acknowledging their counter-normative behaviour, some felt they were subject to stigmatisation by drinkers, doubting their non-drinker status, causing feelings of exclusion or being ‘boring.’ Their desire to ‘be like everyone else’ exposed some insight into the negative stereotypes of sobriety, including frustration behind alcohol’s status elevation. Conclusion: Students adopt strategies to minimise peer pressure and to fit in. Future research should interrogate drinkers’ perceptions of their sober peers to deepen understanding, better break down ‘us and them,’ and mitigate future expectations within the University drinking culture

The impact of face-to-face mental health consumer-led teaching on occupational therapy student empathy levels : Two group comparison design

Introduction Australian and New Zealand accreditation standards for occupational therapy courses mandate consumer involvement in the design, delivery, and evaluation of courses. Consumer involvement in medical, dental, and nursing education has been evidenced as a factor for increasing student empathy. To date, there has been no known research on the impact of mental health consumer involvement on occupational therapy students' empathy. The aim of this study was to investigate if occupational therapy students who receive teaching from a mental health consumer demonstrate higher levels of empathy compared with students who receive teaching delivered by occupational therapy academics. Methods Pre–post, quasi experimental, two group comparison design was used to measure second-year student empathy pre and post a consumer-led teaching tutorial. Students (N = 217) were randomised into two groups across three university campuses: ‘teaching as usual group’ (control) or ‘consumer-led’ group (experimental group). The Jefferson Scale of Empathy was used to measure student empathy. Results N = 138 matched scales were returned. Little difference in empathy scales was detected between groups. The ‘consumer-led’ group increased for the empathy scale by 3.4(95% CI: 0.7,6.1, p = 0.014) but was not statistically significant compared to 1.3(95% CI: −1.0,3.5, p = 0.267) for the control group. Both groups scored highly on empathy. Conclusion This study found that occupational therapy students had pre-existing high levels of empathy. The challenge for future research is to identify appropriate ways to measure the impact of mental health consumer involvement on occupational therapy curriculum and students

Reporting on patient and public involvement (PPI) in research publications: Using the GRIPP2 checklists with lay co-researchers

© The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License. https://creativecommons.org/licenses/by/4.0/Background: Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014-2019). Methods: A descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process. Results: Out of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly. Conclusions: This is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.Peer reviewe

Guidance for Researchers: Feedback : Patient and Public Involvement (PPI): Feedback from Researchers to PPI Contributors

© 2018 The Author(s). This an open access work distributed under the terms of the Creative Commons Attribution Licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited