TACT: What impact does user involvement have on the working practices of a clinical trial research centre and academic research centre?
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Abstract Background The Health Research Board-Trials Methodology Research Network (HRB-TMRN) celebrates International Clinical Trials Day with the help of the younger members of our community through the Network’s ‘Schools Teaching Awareness of Randomised Trials (START)’ initiative. START seeks to increase public awareness of randomised trials in Ireland. Launched in 2016, it asks children (8–12 years old) to conduct and report their very own fun randomised trial. The study reported in this paper sought to explore children and teachers perceptions and experiences of the START initiative. Methods We conducted eight, one-to one interviews with teachers and eight focus groups with 61 children who took part in the 2018 START initiative. Interviews and focus groups were recorded and transcribed and the data analysed using template analysis. Results The findings of this study highlight the benefits of participating in START and the areas of the initiative that required further attention. Teachers and children recalled the benefits of experiential learning associated with START and learning by doing encouraged a fun way of engaging with trial processes. By recalling all aspects of planning, conducting and reporting their trial, the children in this study demonstrated their awareness of the trial processes. The teachers suggested that START provides a valuable framework to contribute to key aspects of the primary school curriculum in Ireland. The experiences of these participants also provided recommendation for improving the programme for future START participants. Conclusions Increasing public awareness and understanding of randomised trials can help increase public engagement in trials. By educating children about the importance of trials and supporting them to ‘learn by doing’ by carrying out their own trial, the START initiative can contribute substantially to children’s awareness and understanding of trial processes. Given that children are the public, the patients and the researchers of the future, initiatives such as START deserve attention.
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Background
Public involvement is mandated by the National Institute for Health Research (NIHR) and its 'UK Standards for Public Involvement in Research' provide a benchmark for effectiveness. Whilst guidance exists about how, when and why to enact public involvement, there is still debate around how to evaluate it and its impact. Public involvement is an integral component of the personalised care planning for older people with frailty programme (PROSPER). This work aimed to evaluate public involvement structures in the feasibility stage of the PROSPER programme and provide recommendations for its optimisation.Methods
Two lay representatives with requisite training and skills conducted qualitative face-to-face interviews with lay members and stakeholders from all levels of the PROSPER programme, from strategic to operational. The interviews explored influence and impact. In addition, documentary analysis of minutes from meetings involving lay members was performed to identify to what extent lay member involvement was embedded in the Programme along with barriers and facilitators to engagement. Two researchers and the lay representatives conducted thematic analysis of both sets of data using a framework based on the NIHR standards.Results
Twelve qualitative interviews and twenty three documentary analyses of meeting minutes were conducted. Identified themes were centred on: 1) individual members, notably training and skills utilisation and development and learning around the research process, and 2) the demonstrable impact of public involvement on individuals, the Programme, NHS research and the wider community. Improvements to current arrangements, including diversity of representation in the public involvement groups and the timely communication of information to its members, were proposed as recommendations for the development of public involvement in the definitive trial.Conclusion
This evaluation has shown that the current public involvement structures in PROSPER largely meet the NIHR standards. Furthermore, it has highlighted tangible impacts of public involvement for individuals, the Programme and the wider community. However, several areas of improvement were recognised which will be addressed in the definitive trial. Strengths and limitations around lay representatives conducting interviews and members' impact on the research were identified.Thematic Analysis
Public Involvement
Public Engagement
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Rationales for involving service users and carers in professional health and social work education tend to derive from arguments of empowerment, consumer rights and/or improvement in service outcomes. In the UK, these rationales are now firmly embedded, and involvement is increasingly expected in all aspects of training, but little literature exists describing or evaluating the impact of involvement outside teaching activities. This paper describes the approach to involvement in admissions interviews in the social work and clinical psychology programmes at the University of Birmingham. It reports the results of a post hoc survey into the experiences and expectations of the 2007–08 cohorts of successful applicants and interview-panel members from each programme, with the aims of highlighting underlying rationales and informing future practice. Survey respondents tended to focus on outcome-based rationales rather than value-based ones in support of involvement. Impact on the selection process was cited by many as important, but service user and carer visibility to applicants may be a more significant outcome. Disagreements among panel members were uncommon, but did raise some training and procedural issues. To be meaningful, the rationale(s) for involvement should be clearly articulated at the outset and the mode(s) of involvement should reflect this.
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Promoting research capacity within public health can encourage and engage employees to undertake research, utilising their understanding of the complex needs that exist within the public health system to provide more relevant research outcomes. Despite this, there are a number of reasons cited by health care professionals as to why research is not undertaken, and a lack of support for research participation results in missed opportunities for experienced clinical and public health staff to gain research experience, expand the evidence base, and promote and support research. The aim of this study is to identify if education in research, delivered through a series of lectures at a large tertiary referral hospital, results in an increase in the experience and intent to conduct research. A series of six lectures to aid in the understanding and development of research were delivered to health employees, health care professionals, students and their associates within a large public Australian hospital. Following these lectures, a validated instrument was developed and asked respondents to assess their research activity, research training history, and experience in conducting research using a retrospective pre/post- test design. Over half (57.1%) of respondents (n = 49) reported no previous researcher education training prior to the lectures. Following the lectures, reported researcher experience increased significantly in the areas of writing a research protocol, using qualitative research methods, publishing research, writing and presenting a research report, analysing and interpreting results, using quantitative research methods, generating research ideas, and applying for research funding. At 6 months following the lecture series intent to be involved in further research was seen in the areas of submitting an ethics application, analysing qualitative and quantitative research data, and research funding applications. Six one hour face to face research lectures can improve self-reported levels of intention to become involved in research as well as research experience amongst hospital health care professionals at 6 months. This traditional modality of education should still be considered as relevant strategy in building research capacity as measured innovatively using a retrospective pre/post test methodology.
Research Design
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In the UK, the recruitment of patients into clinical research is a national health research and development policy priority. There has been limited investigation of how national level factors operate as barriers or facilitators to recruitment work, particularly from the perspective of staff undertaking patient recruitment work. The aim of this study is to identify and examine staff views of the key organisational barriers and facilitators to patient recruitment work in one clinical research group located in an NHS Academic Health Science Centre. A qualitative study utilizing in-depth, one-to-one semi-structured interviews with 11 purposively selected staff with particular responsibilities to recruit and retain patients as clinical research subjects. Thematic analysis classified interview data by recurring themes, concepts, and emergent categories for the purposes of establishing explanatory accounts. The findings highlight four key factors that staff perceived to be most significant for the successful recruitment and retention of patients in research and identify how staff located these factors within patients, studies, the research centre, the trust, and beyond the trust. Firstly, competition for research participants at an organisational and national level was perceived to undermine recruitment success. Secondly, the tension between clinical and clinical research workloads was seen to interrupt patient recruitment into studies, despite national funding arrangements to manage excess treatment costs. Thirdly, staff perceived an imbalance between personal patient burden and benefit. Ethical committee regulation, designed to protect patients, was perceived by some staff to detract from clarification and systematisation of incentivisation strategies. Finally, the structure and relationships within clinical research teams, in particular the low tacit status of recruitment skills, was seen as influential. The results of this case-study, conducted in an exemplary NHS academic research centre, highlight current systematic challenges to patient recruitment and retention in clinical studies more generally as seen from the perspective of staff at the 'sharp end' of recruiting. Staff experience is that, beyond individual clinical research design and protocol factors, wider organisational and extra-organisational norms, structures, and processes operate as significant facilitators or hindrances in the recruitment of patients as research subjects.
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Health Services Research
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Objectives To identify the scope of active patient involvement in medical education, addressing the current knowledge gaps relating to rationale and motivation for involvement, recruitment and preparation, roles, learning outcomes and key procedural contributors. Methods The authors performed a systematic search of the PubMed database of publications between 2003 and 2018. Original studies in which patients take on active roles in the development, delivery or evaluation of undergraduate medical education and written in English were eligible for inclusion. Included studies’ references were searched for additional articles. Quality of papers was assessed using the Mixed Methods Appraisal Tool. Results 49 articles were included in the review. Drivers for patient involvement included policy requirements and patients’ own motivations to contribute to society and learning. Patients were engaged in a variety of educational settings in and outside of the hospital. The vast majority of studies describe patients taking on the role of a patient teacher and formative assessor. More recent studies suggest that patients are increasingly involved in course and curriculum development, student selection and summative assessment. The new body of empirical evidence shows the wide range of learning objectives was pursued through patient participation, including competencies as professional, communicator, collaborator, leader and health advocate, but not scholar. Measures to support sustainable patient involvement included longitudinal institutional incorporation, patient recruitment and/or training, resource support and clear commitment by faculty. The importance and advantages of patient involvement were highlighted by students, faculty and patients themselves; however, organisations must continue to consider, monitor and take steps to mitigate any potential harms to patients and students. Discussion This systematic review provides new knowledge and practical insights to physicians and faculty on how to incorporate active patient involvement in their institutions and daily practice, and provides suggested action points to patient organisations wishing to engage in medical education.
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Critical appraisal
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INTRODUCTION
Internationally the need for the development of clinical academic careers for nurses, midwives and allied health professionals is becoming ever more apparent. Clinical academics maintain their clinical practice whilst also carrying out research, placing them in a unique position to make connections between the two fields.
Integrated academic training pathways have been introduced across the UK since 2006 to combine clinical training with research experience; however, aspiring clinical academics still face a range of challenges in balancing the clinical and research aspects of their careers and there is a lack of evidence to demonstrate impact of clinical academic career pathways, post initial training.
AIM
This research aimed to follow up scholars from a Pre-Masters and Pre-PhD Clinical Academic Training Programme delivered since 2013, to investigate the extent to which their training has been implemented in clinical practice and to explore the extent to which the training enabled them to move on to develop and support subsequent research activity in the clinical setting.
MATERIALS/METHODS
This qualitative study followed up participants (including those who did not successfully complete) from the Health Education England: East Midlands funded Clinical Academic Careers training programme, delivered at Lincoln from 2013-2017. All previous scholars were contacted and invited to take part in an individual interview. Data were collected from May to July 2017. Ethical approval was granted by the host Higher Education Institution. 18 in-depth interviews were conducted, transcribed verbatim and thematically analysed.
RESULTS
The results of the study will be presented at the conference. Key barriers and facilitators to accessing and sustaining, both initial research training and on-going implementation have been identified.
DISCUSSION
This research highlights the importance of clinical academic training programmes in developing and supporting an environment conducing to research in the clinical healthcare setting.
CONCLUSION
There is a need for on-going work to support both clinical academic scholars and also manages working in the healthcare setting, to overcome some of the practical and financial barriers to the development of clinical academics.
Clinical Practice
Health Professionals
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Abstract This paper reports on the research process and findings of a commissioned study of a Sure Start Children's Centre based in the North West of England. The study focused specifically on how child observations were being carried out in the Children's Centre to inform assessment and planning. It was imperative that the research process should not be perceived as something being "done" to staff of the Children's Centre but as one in which there was a willing engagement with a view to making use of the research findings to build on their own practice. The led to the practitioners starting a cycle of action research themselves that informed the implementation of new approaches in the carrying out of child observations. It was useful for the research team to relate this course of action both to a personal and practical dimension so that practitioners could be supported in their own research-informed practice. This study identified that the practitioners are open to new ideas and are willing and eager to explore new procedures to facilitate effective practice. While the current process of observation, assessment and planning that is being followed for individual children is encouraging, it has its limitations because some children may not be observed on a regular basis and therefore information about their current needs, interests and abilities may be missed. The use of observations to assess children's progress is seen by most of the practitioners as a challenge. This study has revealed important insights into the ways in which outsider researchers can inspire early years practitioners to reflect upon their own practice and provision. Notes 1. The reformed Statutory Framework for the EYFS takes effect from 1 September 2012. 2. The CWDC was formed in 2005 with a remit to strengthen the children's workforce. However, in March 2012 it lost its status as a non-departmental public body due to cuts in public funding by the present coalition government. The Department for Education Teaching Agency has taken over the CWDC's work with early years. 3. Carefully chosen and organised quality resources placed in areas that are always available for children to access independently across every area of learning. Additional informationNotes on contributorsPatricia Giardiello Dr Patricia Giardiello is a Senior Lecturer at Liverpool Hope University Joanne McNulty Miss Joanne McNulty is a Senior Lecturer at Liverpool Hope University Babs Anderson Ms Babs Anderson is a Lecturer at Liverpool Hope University
Action Research
Good practice
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Abstract APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis to enable future differential diagnosis and treatment. During a 2-year clinical study images, biomarkers and clinical data are collected from people living with knee osteoarthritis and data are analyzed to confirm patterns that can indicate such different subgroups. A Patient Council (PC) has been set up at project initiation and consists of five people from Norway, The Netherlands and UK. Initially, this group of individuals had to learn how to effectively work with each other and with the researchers. Today, the PC is a strong team that is fully integrated in the consortium and acknowledged by researchers as an important sounding board. The article describes this journey looking at formal processes of involvement – organizational structure, budget, meetings – and more informal processes such as building relationships and changing researcher perceptions. It describes how the PC helped improve the experience and engagement of study participants by providing input to the clinical protocol and ensuring effective communication (e.g. through direct interactions with participants and newsletters). Furthermore, the PC is helping with dissemination of results and project advocacy, and overall provides the patient perspective to researchers. Additionally, the authors experienced and describe the intangible benefits such as a shift in researcher attitudes and a sense of community and purpose for PC members. Importantly, learnings reported in this article also include the challenges, such as effective integration of the PC with researchers’ work in the early phase of the project. Trial registration US National Library of Medicine, NCT03883568 , retrospectively registered 21 March 2019.
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