Background
This impact case will improve the quality, value and reach for those who are eligible for the trial, improving the diversity and inclusivity of underrepresented groups. Understanding the barriers and facilitators to taking part in the trial within this context will create a more inclusive trial and increase uptake.
In turn, it will enable children and their families to increase their knowledge about cochlear implant and improve key hearing health outcome including sound localisation, fatigue and quality of life. Beneficiaries of the impact case include children with cochlear implants and their families; healthcare organisations and staff within them and implementors of technological adoption (i.e. through the virtual reality). Impact will take place regionally – at several sites where the virtual reality is available, however findings can be translated nationally and internationally due to its clinical trial nature.
Research
This is a research study with a series of projects (work packages; WP) that make up the overall project. The research insight that will inform the impact include look at current data from the BEARS Trial (which Professor Helen Cullington is the lead researcher). Within this it will examine the trial participants against the UK population of deaf children with implants focusing on a range of factors (ethnicity, socioeconomic status, home language, sex, number of siblings, and parent/carer educational level).
This will enable us to understand the larger demographic of this population for future research and clinical trials. One part of this research rests upon understanding the needs of families and children who meet the needs of the clinical trial. The research insights gather from this include utilising data from workshops to plan how to make recruitment fairer for the rest of the trial. Exploring the views of those who choose not to take part I the BEARS trial will enable us to understand any barriers to this to make the trial more inclusive in the future.
Moreover, to get a wider level of understanding impact, speaking to clinicians, teachers and family representatives will enable us to obtain a more holistic picture. Finally, because of the nature of underrepresentation in clinical trials – one core focus is the involvement of patients and public. This will help the overall BEARS trial and make use of the value of lived experience. Beyond this research, there has been an active focus on utilisation of lived experience both within co-production initiatives and in general healthcare settings.
Impact
The existing BEARS trial is currently ongoing to test if using virtual reality games at home can help children with cochlear implants hear better. This research is running in 11 of the 16 United Kingdom (UK) centres that care for children with implants. If the games are helpful, we want to offer them to all children with cochlear implants in the UK to use at home. Some people may find it hard to take part in research, especially if they are from a minority community or feel excluded for other reasons. We want our research results to apply to everyone, so we want to make sure that the people who take part are similar to the population as a whole. Thus, this research aims to look at how diverse the children involved in BEARS are, and how we can improve this.
This project is unique in several ways. First, as previously stated many healthcare interventions /trials often struggle to reach all groups who would benefit from them (e.g. ethnic minority groups, young people, poor health literacy, low socio-economic status), and this project not only aims to reach these people but find out the barriers and facilitators in the context of technological innovation role out. While the grant is costed within the NIHR (a predominately healthcare grant), by co-authoring from a management scholar perspective enables an interdisciplinary collaboration. This also draws on my (Trishna Chauhan’s) previously funded NIHR PhD within a management school – bridging healthcare research within the management discipline. Finally, while the funding source is for a specific population, learning about the demographics of clinical trial populations will increase uptake (clinical perspective) from a management perspective it helps us to understand behaviour changes including but not limited to strategic management, leadership, diffusion of innovations and the norms of professionalised contexts.
This research also has several desired changes in the context of the grant – this includes understanding and improving the diversity in recruitment for the BEARS trial and that with of the general population of deaf children with cochlear implants. The desired change here is to then increase the uptake of children within this clinical trial. The desired change will also aim to benefit those who choose not to take part in the BEARS, as it will inform of us of ways we can alter recruitment or clinical trials in general.Finally, our overall desired change is to improve the scale up of this trial to promote inclusivity.
Finally, the benefits to stakeholders include a number of people. Academic researchers, those involved in clinical trials including the design, practitioners who work in these services as well as the NHS. The public will also benefit both in terms of inclusivity but also the project has a strong dynamic of patient public involvement running throughout this impact case and the overall BEARS trial.
Dr Trishna Chauhan
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