Sustaining meaningful user involvement in research, local government planning and policy-making

该项目是伦敦国王学院的社会科学家与“塑造我们的生活”-一个由残疾人领导并为残疾人服务的全国性组织-合作的一部分。我们正在共同努力创造新的服务，使残疾人和使用卫生和社会护理服务的人更容易参与卫生和社会护理服务的设计、研究和改进。这是一件好事，因为这意味着（a）服务将更适合目的，因为它们的设计将根据使用它们的人的需求和偏好，（B）这将有助于阻止残疾人和服务被排除在影响他们生活的决定之外。这项博士研究的目的是帮助测试一种新的和未经测试的小组工作方式是否可以帮助研究人员，残疾人和其他使用健康和社会护理服务的人一起工作。该研究的结果将用于创建新的，易于使用的资源，以支持其他组织使用这种新的合作方式，以便他们能够更有效和公平地工作。“塑造我们的生活”组织创建了一个由残疾人和使用卫生和社会护理服务的人领导的组织网络。他们最近获得了国家彩票的4年资助，与该网络中的人合作，为残疾人和使用保健和社会护理服务的人设计两项新的服务。这些服务将使残疾人和使用卫生和社会护理服务的人更容易参与卫生和社会护理服务的设计、研究和改进，以便他们的声音得到倾听并发挥作用。在2022-2024年期间，该项目将研究这些服务是如何设计的，然后研究人们如何在全国各地使用这些服务。这些服务是根据社会科学家埃莉诺·奥斯特罗姆获得诺贝尔奖的工作成果，采用小组工作的方法开发的。她研究了世界各地的团体如何管理当地的公共资源（例如森林），发现当团体遵循8项原则时，它们往往工作得最好。这些原则涉及以下事项：确定需要做什么以及由谁来做;确保每个人都做出公平的贡献;以及如何解决冲突。这些看起来像是常识，但通常情况下，团体并不自然地做到这一点，因此效率较低。这些原则尚未在服务用户和研究人员之间的伙伴关系中得到检验。我们将共同调查使用这些原则是否为残疾人和其他使用卫生和社会护理服务的人提供了更好的服务。一旦创建了新的服务，该项目将研究谁使用它们，为什么使用它们以及如何使用它们。它将集中在英国四个将使用这些服务的地方。博士生将参加重要会议，观察会发生什么，并采访设计新服务的人和使用这些服务的人。我们对长期的情况特别感兴趣。因此，需要回答的关键问题是：这种发展服务的新方式是否使服务更好、更公平？如果是，为什么？国王学院伦敦和塑造我们的生活将共同努力，开发一套资源和工具，以帮助其他组织以这种新的方式思考和工作。

This project is part of a collaboration between social scientists from King's College London and Shaping Our Lives - a national organisation led by and for Disabled people. We are working together to create new services that make it easier for Disabled people and people who use health and social care services to be involved when health and social care services are being designed, researched and improved. This is a good thing to do because it means (a) services will be more fit-for-purpose because their design will be informed by the needs and preferences of the people using them and, (b) it will help to stop Disabled people and service being excluded from decisions that impact their lives. The aim of this doctoral study is to help test whether a new and untested way of working in groups can help researchers, Disabled people and other people who use health and social care services to work together. The findings from the study will be used to create new, easy to use resources to support other organisations to use this new way of working together so that they can work more effectively and fairly. Shaping Our Lives have created a network of organisations led by Disabled people and people who use health and social care services. They were recently awarded 4 years of funding by the National Lottery to work with people in this network to design two new services with and for Disabled people and people who use health and social care services. These services will make it easier for Disabled people and people who use health and social care services to be involved when health and social care services are being designed, researched and improved so that their voices are heard and make a difference. During the years 2022-2024, this project will study the how these services are designed and then how people use them in different places around the country. The services are being developed by using an approach to working in groups based on the Nobel Prize-winning work of social scientist Elinor Ostrom. She studied how groups around the world managed local public resources (for example, forests) and found that groups tend to work best when they follow 8 principles. The principles relate to such things as: identifying what needs to be done and who is going to do it; ensuring everyone is making a fair contribution; and how to resolve conflicts. These seem like common sense but often groups do not do them all naturally and are less effective because of this. The principles are untested in a partnership between service users and researchers. Together we will investigate if using these principles has led to better services for Disabled people and other people who use health and social care services. Once the new services have been created, this project will study who uses them, why they use them and how they use them. It will focus on four local areas in the UK where the services are going to be used. The doctoral student will take part in key meetings and observe what happens as well as interviewing the people who are designing the new services and those who are using them. We are particularly interested in what happens in the long term. So, key questions to be answered are: does this new way of developing services make services better and fairer and, if yes, why and for how long? King's College London and Shaping Our Lives will then work together to develop a set of resources and tools to help other organisations to think and work in this new way.