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

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.