Innovative participatory methods in health & social care: academic/user-led organisation partnerships as a response to changing research environments

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This project will test and create new ways for researchers, Disabled people and other health and social care service users to work in partnership so that research can (1) be shaped and informed by the experiences of service users (2) better meet service user needs (3) positively impact society. Traditionally research has been a one-way process - researchers come up with their own questions and then try to answer them. Recently people have argued that if researchers want to ask and answer the most important questions, they must work with people who have personal experience of the issues being researched. This may seem like common sense but is a big change from how research has traditionally been done. This has created new challenges. For example, how do service users get involved in research? And, what are the best ways for researchers and service users to work together? These questions seem simple but studies show many researchers struggle, or do not try, to work with service users. Our project brings together social scientists from King's College London and Shaping Our Lives - a national organisation led by and for Disabled people - to achieve two aims: (1) to work in partnership to develop new services that will support Disabled people and service users to become more involved in research and (2) to test a new approach to partnership working to help researchers and service users work together more fairly and effectively.Shaping Our Lives have created a network of organisations led by Disabled people and service users and were recently awarded 4 years of funding (almost £200,000) by the National Lottery to use this network to design new services with and for Disabled people. These services will make it easier for Disabled people and other service users to get involved in research and policy making, have their voices heard and make an impact. Our project will allow Shaping Our Lives and King's College London to work in partnership to study the first 16 months of the lottery-funded project when the new services will be designed. We will test a new approach to partnership working 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 8 principles determine whether groups work well together. The principles relate to such things as: identifying what needs to be done and who is going to do it; creating rules; 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 also untested in a partnership between service users and researchers. So Shaping Our Lives and King's College London will investigate together if these principles support the efforts to create new services with and for Disabled people and service users. This involves hiring a researcher and paying and supporting Disabled people and service users to play active roles as co-researchers. Together we will adapt the principles to make them fit-for-purpose and apply them in the lottery-funded project. The researcher will take part in this process, write daily notes and interview team members; monthly project meetings will bring the team together to reflect on how things are going. We want to move away from traditional ways of doing research and instead learn about and improve the social world by changing and studying it in partnership. By the end we will have: (1) developed new ways for Disabled people and other service users to get involved in research, have their voices heard and make an impact (2) tested a new approach to partnership working (3) written an academic paper and public report to share our learning (4) used this learning to write an application for ESRC funding to study the national implementation of the new services (5) strengthened our partnership.