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

用户参与研究越来越被认为是确保研究反映生活受到影响的人的需求和偏好的重要方式。然而，它往往是以一种象征性的方式进行的，忽视了许多边缘化和“很少听到”群体的声音，例如有学习障碍或痴呆症的人，以及其他不容易参与传统研究讨论方式的人。我们使用“很少听到”一词作为一个普遍认可的术语来描述这个问题。然而，我们认识到，其他术语，如“很少参与”或“很少听取”可能更好地反映了边缘化的经验。我们认识到，研究人员需要改变他们思考和做事的方式，以确保他们的研究是包容性的。选择，声音和改变网络旨在推进社会科学理论和实践在这一领域。我们将通过汇集来自学术界、第三部门以及最重要的是具有生活经验的英格兰、爱尔兰和苏格兰的一系列专家来做到这一点。这些专家无论是单独还是合作，都有与研究人员合作的记录，特别是与学习困难者和痴呆症患者合作。这笔资金将用于举办三个为期两天的研讨会，将主要的研究利益相关者聚集在一起（学者、有痴呆症和/或学习障碍生活经历的人和第三部门），以便分享和联合收割机知识，建立一个可持续的合作网络。该网络将支持利益相关者批评当前的用户参与形式，并制定创造性的方法，与边缘化和被忽视的群体进行有意义的和包容性的合作。这些活动的成果将包括针对研究人员、决策者和研究资助者的创新原则和指导，以支持包容性研究实践。为此，将分别在牛津、都柏林和因弗内斯举办以下主题为“选择、声音和变革”的讲习班：学术网络成员以世界咖啡馆的形式与当地很少听到社区和倡导团体的人会面，并共同努力解开“选择”，“声音”，“很少听到”，第二天：学术网络成员见面，并对他们的见解和学习进行反思。与会者提出的问题和第一天制作的材料将帮助我们描述需要解决的难题，并说明我们如何开始解决这些难题的想法，以供研讨会3研讨会3：第一天：学术网络成员致力于研讨会的问题和想法1+ 2设计一系列可能的创新和研究原则，以支持在研究实践中涉及边缘化和被忽视的行为改变第二天：最后一天将是一个世界咖啡馆的形式，其中提出的创新和研究原则，前一天制定的将提交给当地人从很少听到社区和倡导团体，研究资助者，与来自大学研究室的代表进行讨论，并决定推进哪些想法。结果该网络将挑战研究人员（包括我们自己）和资助者重新思考关于如何与来自很少听到的群体的人进行尊重，有意义和合作研究的假设。在这一领域制定改进的流程和原则将支持制定更具创新性和有效的干预措施，打破通常的自上而下的方法，并在经济和社会上带来更大的投资回报。计划的产出包括对学术文献的贡献、用于测试原则的未来研究应用、教育资源和指导以及供资者的政策简报。

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 3Workshop 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.OutcomesThe 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.