Choice, voice and change: developing networks for the involvement of people from seldom heard communities in England, Ireland and Scotland

Lead Research Organisation: University of Aberdeen
Department Name: Sch of Medicine, Medical Sci & Nutrition

Abstract

User involvement in research is increasingly recognised as an important way of ensuring research reflects the needs and preferences of those whose lives are affected. However, it is often done in a tokenistic way and ignores the voices of many marginalised and 'seldom-heard' groups, such as people with learning disabilities or dementia, and other people who do not find it easy to get involved in traditional ways of discussing research.
We use the term 'seldom heard' as a commonly recognised term to describe this issue. We recognise, however, that other terms such as 'seldom involved' or 'seldom listened to' might better reflect the experience of marginalisation. We recognise that it is researchers who need to change the way they think and do things, to make sure their research is inclusive.
The Choice, Voice and Change Network aims to advance social science theory and practice in this area. We will do this by bringing together a range of experts based in England, Ireland and Scotland from within academia, the third sector and, crucially, those with lived experience. Individually and in collaboration, these experts have track records of working in partnership in research, particularly with people with learning difficulties and people living with dementia.
The funding will be used for three 2-day workshops to bring together key research stakeholders (academics, people with lived experience of dementia and/or learning disability and the third sector) from the three countries in order to share and combine knowledge, and create a sustainable, collaborative network. The network will support stakeholders to critique current forms of user involvement and develop creative approaches to engaging and researching in meaningful and inclusive collaborations with marginalised and ignored groups. The outcomes of these activities will include innovative principles and guidance aimed at researchers, policy makers and research funders to support inclusive research practice. This will be achieved by running the following workshops themed on Choice, Voice and Change, in Oxford, Dublin and Inverness respectively:
Workshops 1+2:
Day 1: Academic network members meet with local people from seldom heard communities and advocacy groups in a World Café format ,and work together to unpick the concepts of 'choice', 'voice', 'seldom-heard', 'inclusion' and 'participation' using a variety of creative methods.
Day 2: Academic network members meet and reflect on the insights and learning. Issues raised by participants and materials produced on Day 1 will help us describe difficult problems we need to address and statements of ideas about how we might begin to tackle them to feed into Workshop 3
Workshop 3:
Day 1: Academic network members work on the problems and ideas from workshops 1+2 to design a series of possible innovations and research principles to support behaviour change in research practice involving marginalised and ignored communities.
Day 2: The final day will be a World café format in which the proposed innovations and research principles developed the previous day will be presented to local people from seldom heard communities and advocacy groups, research funders, and representatives from university research offices for discussion and to decide which ideas to take forward.
Outcomes
The network will challenge researchers (including ourselves) and funders to rethink assumptions about how to engage in respectful, meaningful and collaborative research with people from seldom-heard groups. The development of improved processes and principles in this area will support the production of more innovative and effective interventions that disrupt the usual top-down approaches and deliver greater return on investment economically and socially.
Planned outputs include contributions to the academic literature, a future research application to test the principles, educational resources and guidance, and policy briefs for funders.

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