Research Advisory Group Research Articles

Speaking Softly and Listening Hard: The Process of Involving Young Voices from a Culturally and Linguistically Diverse School in Child Health Research.

The involvement of young people in the planning of research continues to be rare, particularly for young people from culturally and linguistically diverse communities. This paper describes our experience in establishing a Youth Research Advisory Group (YRAG) in South West Sydney (SWS), including barriers and successful strategies. One hundred and fifteen students between school Years 7 and 12 (ages 11–18) took part in at least one of five sessions between 2019 and 2021. In total, we carried out 26 YRAG sessions, with between five and 30 students in each. Sessions focused on mapping the health priorities of the participants and co-developing research project proposals related to their health priorities. Our work with students revealed that their main areas of concern were mental health and stress. This led to material changes in our research strategy, to include “Mental Health” as a new research stream and co-develop new mental health-related projects with the students. Important strategies that enabled our research included maintaining flexibility to work seamlessly with organisational and individual preferences, and ensuring our processes were directed by the schools and—most importantly—the students themselves. Strategies such as maintaining an informal context, responding rapidly to student preference, and regularly renegotiating access enabled us to engage with the students to deepen our understanding of their experiences.

Time to Listen: Children’s Voice in Geoscience Education Research

Arguably the greatest threat facing society is that posed by irreversible climate change. In tandem with mitigating the effects of climate change, we must now make decisions about issues such as renewable energy, sustainable and safe water supplies, management of renewable and non-renewable natural resources, and management of natural disasters. The current school-age generation will see the worst effects of climate change, including greater frequency and intensity of extreme weather events; shortages of water and other necessary resources; and dangers due to pollution and toxicity in human environments and the human food chain. The next generation is coming of age as difficult socio-political choices are being made at local and national levels to manage resources and mitigate environmental damage. It is therefore important to center the voices of children and young people in research aiming to address the social, political, and educational dimensions of geoscience topics, including climate change and related topics. This paper proposes the use of Children’s Research Advisory Groups (CRAGs) to meaningfully include children and young people as co-researchers in geoscience-related research.

Ralph A. Reisfeld, PhD: In Memoriam (1926–2020)

![][1] The sad news that Ralph A. Reisfeld, PhD, passed away on December 6, 2020 reached us early this year, and we would like to reflect on Ralph's long career and distinctive contribution to biomedical science and in particular to the field of cancer research. Ralph was well known

Identifying coping strategies used by patients at a transgender health clinic through analysis of free-text autobiographical narratives.

BackgroundThis paper presents an analysis of 32 narratives written by patients waiting for assessment at a transgender health clinic (THC) in England. Narratives are autobiographical free texts, designed to allow patients to describe in their own words their experiences of their gender identity and/or transition prior to a clinic appointment, as part of the assessment process.ObjectiveNarratives were analysed to identify actions prospective patients had taken to manage their (usually lengthy) waiting times, so that these ‘coping strategies’ could be shared with future patients.DesignCorpus linguistic methodology was utilized to identify common patterns across the whole corpus of text‐based data, augmented with more detailed sociolinguistic analysis of individual narratives.ResultsThere are broad commonalities in the way the transition experience is described across the corpus in terms of presentation of key experiences and feelings. There are specific descriptions of a number of recurring coping strategies, both positive and negative.ConclusionThe empowerment value of writing these narratives may be limited; the existence of recurring key features suggests that patients may feel they have to present their experiences in certain ways to be accepted for treatment. However, dissemination of some positive coping strategies may help future clients of THCs to better cope with waiting times, as well as assisting practitioners in THCs in supporting their patients during this wait.Patient/Public ContributionThe clinic's Service Users’ Research Advisory Group contributed to formulating the objective and design of the study. Results were presented at the clinic's annual PPI conference.

Protocol for a Qualitative Study: Exploring Loneliness and Social Isolation in Emerging Adulthood (ELSIE)

Background: This article describes a protocol for a qualitative study to explore experiences and views and experiences of loneliness and social isolation in young adults, in Ireland. Methods: A youth Research Advisory Group will be consulted on the development of study materials. Our data collection methods will be guided by participant preferences, with potential participants choosing between virtual interviews, focus groups, and an online survey including the open-ended questions contained in the interview/focus group schedule. The data will be analyzed using framework analysis. Discussion: This protocol highlights methodological considerations relevant to a qualitative research study co-designed with young adults. Study findings will be relevant to mental health policy makers and other stakeholders involved in youth mental health.

Using Technology to Seek the Vulnerable and Marginalized Child’s Voice in Hospital: Co-working with a ‘Child Research Advisory Group’ (CRAG)

ABSTRACT This paper illustrates the development, value and outcome of co-working with a ‘child research advisory group’ (CRAG) within healthcare research. The UK qualitative study completed as part of a Doctorate in Education (EdD) primarily explored the child’s experience of hospital in Northern Ireland from the perspective of the child (and children’s nurse). Essentially the role of the CRAG was to co-develop simple research questions and a data collection tool which was child centered, rather than adult centered – the research tool would be used with the main study child participants aged six to 12 years old in 2017. Five primary school children, with experience of hospital from year six and seven agreed to act as a CRAG in 2016. The outcome being an innovative data collection tool which is an App featuring the choice of two talking cartoon characters who asked the co-designed research questions via an iPad. The characters are Sprinkle Cupcake and Ronaldo Football.

Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol

BackgroundInvolvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how best to involve service users and efforts are often criticized for being tokenistic. In low-and-middle income countries, less attention has been given to the roles of service users within mental health systems. The proposed study is part of a larger project intended to develop service-user involvement in mental health system strengthening in Ethiopia. A Theory of Change (ToC) model has already been developed through a participatory approach. This study protocol aims to describe the theoretical background and methods to pilot this model using participatory action research (PAR) and explore participants’ experience of involvement.MethodsThe proposed study will apply a PAR approach situated in critical social theory and conduct a phenomenological case study to find out participants’ experience of involvement. This will be conducted in three stages. The focus of Stage 1 will be to(i) establish a Research Advisory Group (RAG), and Research Participant Group (RPG) at district and primary healthcare facility levels, respectively, and (ii) identify and prioritize potential areas of concern for involvement in the domains of advocacy, service planning and development, monitoring and improving service quality. In Stage 2, we will work with the RPG to develop a plan of action for the selected area. Stage 3 will aim to assist the RPG to implement and evaluate the plan of action. Process indicators and observation will be combined with in-depth interviews with participants to elicit their experiences of involvement. Thematic content analysis will be used.DiscussionThe participatory approach to mental health service user involvement in health system strengthening employed by this study will support the implementation of solutions through locally relevant and contextualized actions. Findings from this study will contribute to the body of knowledge towards understanding the complexity of implementation of service user involvement and refine the ToC model for transferability to similar settings.

Health service use by community-dwelling patients with heart failure in northwest London, 2015–18: a retrospective cohort analysis

BackgroundHeart failure management is complex and requires multidimensional care. Clinical guidelines advocate for the use of integrated care, but few studies have described overall health service use by patients with heart failure. We describe overall care usage by community-dwelling patients with heart failure in northwest London using a dataset linked across multiple health-care settings. MethodsIn this retrospective cohort analysis, we used Whole Systems Integrated Care (WSIC) data, a dataset of individual clinical events from primary care, secondary care, and other (defined as community, mental health, and social care) services in northwest London to analyse a retrospective cohort of patients with heart failure. Patients who remain in the WSIC dataset, were aged at least 18 years on Jan 1, 2015, with known age and gender, and whose diagnosis was not made after their date of death. The primary outcome was health-care usage of each of the three service categories overall as well as individual components of secondary care (eg, outpatient appointments) and other services (eg, nursing contacts). Usage patterns were identified using k-means cluster analysis using all distinct contacts for the whole study period and visualised by a heatmap. Nine health-care use variables were used to identify clusters, and differences between clusters in both clustering and non-clustering variables were analysed using Kruskal-Wallis and Pearson χ2 tests. This study was approved by the Discover Research Advisory Group. FindingsData from 39 301 patients with heart failure across 359 general practices between Jan 1, 2015, and Dec 31, 2018, were analysed. Almost all patients had some health service contact during the study period (21 226 [89·1%] of 23 828 in 2015; 24 876 [90·6%] of 27 443 in 2016; 28 663 [90·8%] of 31 554 in 2017; and 31 584 [91·1%] of 34 651 in 2018). Most commonly used services in 2018 were outpatient appointments (24 283 [70·1%] of 34 651 patients), general practitioner (GP) consultations (20 741 [59·9%] patients), unplanned accident and emergency visits (14 145 [40·8%] patients) and community services (13 762 [39·7%] patients), often for nursing. Use of cardiology-specific services ranged from 1005 (2·9%) patients for community visits to 8231 (23·8%) for outpatient visits. Five clusters of patients were identified, each with significantly different care usage patterns and distinct patient characteristics. Patterns included underuse of GP consultations, relative to the average use by the whole cohort, in patients living in more deprived areas; and increased use of other services in patients older than 75 years and those with three or more comorbidities. InterpretationHealth and social care service use was widespread but varied. Patterns of care usage suggest differences across patient groups. This might be due to variation in patients’ access to care and insufficiently integrated care at earlier stages of heart failure. The limitations of our study are that electronic health records like WSIC are not coded for research and subject to some biases; k-means testing is sensitive to the input variables and selection of k; and our findings require further validation and might not be generalisable to regions beyond the northwest London area. Further research is needed to characterise the patterns we have identified. FundingDr Foster (a Telstra Health company), the National Institute for Health Research (NIHR) Health Services Research, and the Imperial NIHR Biomedical Research Centre and the NIHR Collaboration for Leadership in Applied Health Research and Care for northwest London. The views expressed are those of the authors and not those of the NIHR.

Using behaviour change theory to inform an innovative digital recruitment strategy in a mental health research setting

Recruitment in mental health research is challenging, as some disorders such as depression or schizophrenia may involve vulnerable participants that lack motivation as part of their illness. A mental health diagnosis can be stigmatising, so privacy and access to hospital-based patient cohorts is carefully controlled. Our team describe a pragmatic portal recruitment process for facilitating timely recruitment into multiple research studies focusing on mental health. Three factors were analysed; evaluating the success and impact of this novel recruitment process; identification of patterns in recruitment to better target participants; and provision of metrics of the different media formats engaged. A web-based recruitment portal was developed by the research team in collaboration with the South Australian Health and Medical Research Institute (SAHMRI) Consumer & Carer Research Advisory Group. A comprehensive marketing campaign was then undertaken to direct participants towards the portal. Recruitment insights from the dates and times of registration across a two-year period is provided. In total, 933 potential participants registered with the recruitment portal across a two-year period at a cost of approximately $10,000. The advertisement campaign linked to the portal page enabled 506 participants to register in just one week. The area of research was self-selected by the potential participants, then eligibility was followed up with telephone and face to face interviews. Of the total 933 people who registered 706 (76%) expressed an interest in the target clinical depression study, 119 (13%) opted to be clinical controls, and the remainder chose one of the alternative studies. 240 (26%) of those who registered were excluded through telephone interviews because they fell outside of the strict eligibility criterion. We learnt that 77% (n = 723/933) of participants were recruited within seven days of promotional events, providing an interesting pattern of recruitment that may assist future recruitment design.

Exploring patient and public involvement in motor neuron disease research

Objectives: Patient and public involvement (PPI) is a relatively new practice whereby researchers involve patients and the public in the conduct of their research. The Sheffield Motor Neurone Disorders Research Advisory Group (SMNDRAG) is one of the first groups to specialise in motor neuron disease (MND). Its members include people living with MND, carers, relatives, volunteers, clinicians, and scientists. Our aim was to explore the experiences of those who participate in, organise and work with the SMNDRAG.Methods: We conducted 13 semi-structured interviews: 10 with members of the SMNDRAG and three with researchers who have worked with the group. We used thematic analysis to identify ways in which the group influenced research and the barriers and enablers to PPI.Results: A number of motivations for participating in the SMNDRAG were reported but the majority were altruistic. The SMNDRAG offered individuals psychosocial and intellectual benefits. The SMNDRAG has overcome a number of practical and psychological barriers to developing a successful and effective collaborative partnership resulting in a positive impact on research and researchers at each stage of the research process. For example, the group identified research priorities which ensured that research was patient-focused. However, several barriers remain, including the lack of diversity within the group and the perception that PPI participation requires a “certain type of person.”Conclusions: PPI can make a valuable contribution to all aspects of research and can have a positive impact on those involved. We recommend ways in which PPI can and should be incorporated into research.

Moving Towards an Indigenous Research Process: A Reflexive Approach to Empirical Work With First Nations Communities in Canada

Moving towards reconciliation within Indigenous research requires the careful examination of existing practices at all stages of the research process. Engagement in and dissemination of reflexive processes may increase the relevance of research results for Indigenous communities and partners. This article describes and contextualizes the results obtained from this qualitative research study examining parenting needs and child reunification in these communities. The initial results were deemed relevant by the partnering community but research stakeholders reported that they did not reflect all community values. Based on the advice of the Research Advisory Group, the research team decided to further analyze the results to address these shortcomings. The reanalysis process focused on improving the perceived meaningfulness and relevance to communities. Exploration of how these results were re-situated in an Indigenous framework of wellbeing is discussed. Researcher reflections about the project processes and considerations for future research are explored.

Connecting Community to Research: A Training Program to Increase Community Engagement in Research.

The Boston University Clinical & Translational Science Institute (BU CTSI) identified a local need to increase the capacity of members of a diverse inner-city community with no prior knowledge of research to partner with researchers along the research continuum. To design, implement, and evaluate an introductory- level capacity-building training using community pedagogy and providing information about current research and opportunities to partner with local researchers. Guided by two advisory boards of community-engaged professionals and patients, the community engagement team of the BU CTSI designed, implemented, and evaluated the Connecting Community to Research (CCR) training program. We targeted existing community groups in Boston interested in partnering with an academic institution to advance the health of their community. Interactive trainings focused on principles of community-engaged research (CEnR), and how individual experiences might influence research. Each session offered real-time opportunities for participants to engage with local researchers on existing research such as joining a local research advisory group or institutional review board. Self-administered surveys captured participant experiences. Over 1 year, we trained 100 community members and almost all participants felt that the objectives of the training program were met and the information was relevant. More than 50% of the participants took advantage of partnership opportunities with local researchers. A toolkit was designed and disseminated to support others to replicate the program. We demonstrated that an interactive training curriculum designed with a community-engaged pedagogy and supported by opportunities for engagement has the ability to successfully partner community members with academic researchers.

Forum Survey Activities by TTC (The Telecommunication Technology Committee) Technology Research Advisory Group

Forum Survey Activities by TTC (The Telecommunication Technology Committee) Technology Research Advisory Group

Aggressive versus symptom-guided drainage of malignant pleural effusion via indwelling pleural catheters (AMPLE-2): an open-label randomised trial

Indwelling pleural catheters are an established management option for malignant pleural effusion and have advantages over talc slurry pleurodesis. The optimal regimen of drainage after indwelling pleural catheter insertion is debated and ranges from aggressive (daily) drainage to drainage only when symptomatic. AMPLE-2 was an open-label randomised trial involving 11 centres in Australia, New Zealand, Hong Kong, and Malaysia. Patients with symptomatic malignant pleural effusions were randomly assigned (1:1) to the aggressive (daily) or symptom-guided drainage groups for 60 days and minimised by cancer type (mesothelioma vs others), performance status (Eastern Cooperative Oncology Group [ECOG] score 0-1 vs ≥2), presence of trapped lung, and prior pleurodesis. Patients were followed up for 6 months. The primary outcome was mean daily breathlessness score, measured by use of a 100 mm visual analogue scale during the first 60 days. Secondary outcomes included rates of spontaneous pleurodesis and self-reported quality-of-life measures. Results were analysed by an intention-to-treat approach. This trial is registered with the Australian New Zealand Clinical Trials Registry, number ACTRN12615000963527. Between July 20, 2015, and Jan 26, 2017, 87 patients were recruited and randomly assigned to the aggressive (n=43) or symptom-guided (n=44) drainage groups. The mean daily breathlessness scores did not differ significantly between the aggressive and symptom-guided drainage groups (geometric means 13·1 mm [95% CI 9·8-17·4] vs 17·3 mm [13·0-22·0]; ratio of geometric means 1·32 [95% CI 0·88-1·97]; p=0·18). More patients in the aggressive group developed spontaneous pleurodesis than in the symptom-guided group in the first 60 days (16 [37·2%] of 43 vs five [11·4%] of 44, p=0·0049) and at 6 months (19 [44·2%] vs seven [15·9%], p=0·004; hazard ratio 3·287 [95% CI 1·396-7·740]; p=0·0065). Patient-reported quality-of-life measures, assessed with EuroQoL-5 Dimensions-5 Levels (EQ-5D-5L), were better in the aggressive group than in the symptom-guided group (estimated means 0·713 [95% CI 0·647-0·779] vs 0·601 [0·536-0·667]). The estimated difference in means was 0·112 (95% CI 0·0198-0·204; p=0·0174). Pain scores, total days spent in hospital, and mortality did not differ significantly between groups. Serious adverse events occurred in 11 (25·6%) of 43 patients in the aggressive drainage group and in 12 (27·3%) of 44 patients in the symptom-guided drainage group, including 11 episodes of pleural infection in nine patients (five in the aggressive group and six in the symptom-guided drainage group). We found no differences between the aggressive (daily) and the symptom-guided drainage regimens for indwelling pleural catheters in providing breathlessness control. These data indicate that daily indwelling pleural catheter drainage is more effective in promoting spontaneous pleurodesis and might improve quality of life. Cancer Council of Western Australia and the Sir Charles Gairdner Research Advisory Group.

‘I felt closed in and like I couldn’t breathe’: A qualitative study exploring the mainstream educational experiences of autistic young people

Background and aim More autistic young people are being educated in mainstream schools. While existing research suggests that the outcomes of mainstream inclusion are mixed for autistic young people, few studies have examined their views and experiences directly. This article discusses the educational experiences of 12 autistic young people (aged 11–17 years) from their perspectives and how education could be improved to better support the others with autism. Methods A flexible qualitative participatory approach was used which incorporated a range of methods, including individual semi-structured interviews, diamond ranking activities and draw-and-tell activities. A Children’s Research Advisory Group (CRAG) advised on the methods used and matters to be explored. Results The young people offered insights into how education has been for them in mainstream school, mostly negative, but with islets of positive experience. Several described themselves as being socially, emotionally and physically isolated from peers, with loneliness and bullying experienced by some. Participants felt unsupported and misunderstood by teachers within a social and sensory environment that was antithetical to their needs. Some spoke of the dread they felt before and during school and the negative impact their experiences in mainstream has had on their wellbeing. Many participants suggested simple strategies and curriculum adaptations that they felt would have helped make their time at mainstream more successful. These include having more breaks, smaller class sizes, less homework, instructions broken down, safe places to use when anxious and teachers who listen to their concerns and take account of their needs. In short they want to be understood, supported and included. Conclusions There exists scope to better support autistic young people in mainstream education, as evidenced by the literature and the participants in this paper. The participants demonstrate that mainstream is not working for all and that changes, such as smaller class sizes, flexible pedagogy and understanding could improve education for autistic learners. Implications Autistic young people can and should be central to the discussion on school improvement. They also show that being academically able for mainstream school should not be the only aspect when deciding on the suitability of mainstream school for meeting their needs. The young person’s social and emotional wellbeing must be considered to ensure they can flourish, and not flounder.

Viability testing and transplantation of marginal livers (VITTAL) using normothermic machine perfusion: study protocol for an open-label, non-randomised, prospective, single-arm trial

IntroductionThe use of marginal or extended criteria donor livers is increasing. These organs carry a greater risk of initial dysfunction and early failure, as well as inferior long-term outcomes. As...

THE ROLE OF KNOWLEDGE BROKERS: LESSONS FROM A COMMUNITY BASED RESEARCH STUDY OF CULTURAL SAFETY IN RELATION TO PEOPLE WHO USE DRUGS

The study explored cultural safety as a strategy to address the stigma of substance use in acute care settings. Two research team members took on the role of knowledge brokers (KBs) in order to liaise between the research team and two distinct research advisory groups: one with people who use drugs and the other nurses. The KBs were instrumental in ensuring that the research process and outcomes reflected the needs, experiences and aspirations of people who use or have used illicit drugs, and the nurses providing care in hospitals as well as bridging differences in power and privilege between team members and advisory groups.

Family attitudes, actions, decisions and experiences following implementation of deemed consent and the Human Transplantation (Wales) Act 2013: mixed-method study protocol

IntroductionThe Human Transplantation (Wales) Act 2013 (the Act) introduced a ‘soft opt-out’ system of organ donation on 1 December 2015. Citizens are encouraged to make their organ donation decision known...

Improving the production of applied health research findings: insights from a qualitative study of operational research

BackgroundKnowledge produced through applied health research is often of a form not readily accessible to or actionable by policymakers and practitioners, which hinders its implementation. Our aim was to identify research activities that can support the production of knowledge tailored to inform policy and practice. To do this, we studied an operational research approach to improving the production of applied health research findings.MethodsA 2-year qualitative study was conducted of the operational research contribution to a multidisciplinary applied health research project that was successful in rapidly informing national policy. Semi-structured interviews (n = 20) were conducted with all members of the project’s research team and advisory group (patient and health professional representatives and academics). These were augmented by participant (> 150 h) and non-participant (> 15 h) observations focusing on the process and experience of attempting to support knowledge production. Data were analysed thematically using QSR NVivo software.ResultsOperational research performed a knowledge mediation role shaped by a problem-focused approach and an intent to perform those tasks necessary to producing readily implementable knowledge but outwith the remit of other disciplinary strands of the project. Three characteristics of the role were found to support this: engaging and incorporating different perspectives to improve services by capturing a range of health professional and patient views alongside quantitative and qualitative research evidence; rendering data meaningful by creating and presenting evidence in forms that are accessible to and engage different audiences, enabling them to make sense of it for practical use; and maintaining perceived objectivity and rigour by establishing credibility, perceived neutrality and confidence in the robustness of the research in order to unite diverse professionals in thinking creatively about system-wide service improvement.ConclusionsOur study contributes useful empirical insights about knowledge mediation activities within multidisciplinary applied health research projects that support the generation of accessible, practice-relevant and actionable knowledge. Incorporating such activities, or a dedicated role, for mediating knowledge production within such projects could help to enhance the uptake of research findings into routine healthcare and warrants further consideration.

Understanding the role of patient and public involvement in renal dietetic research

The objective was to consult patients on a proposed recruitment strategy to a patient and public involvement exercise. We wanted to explore the reasoning and willingness of patients to become co-researchers within a grant application. Eighteen people using the renal health service informed the consultation by action research so that their experiences could be used to guide the overall methodology. Twelve people took part in semi-structured interviews. NVIVO 10 and Framework Analysis were used to interpret emerging themes from the data. The recruitment strategy, informed by research expertise, became an experience-based expert design. The design took into account the limitations of attendance, the informational and physical needs of these service users. Service users wanted to share their experiences with people who would listen and were in a position to help make the changes. This gave them a sense of purpose and autonomy in their treatment and helped them cope with living with renal disease in society. However, feelings of doubt as to whether they could personally ‘make a difference’ as a co-researcher, were common. Consulting service users enabled the research team to recruit more people to interviews to explore motivation considering the unique personal and social needs of this service user group. Service users may need additional and continued support if they are to successfully take part in a clinical study research advisory group.