Title: Innovative participatory methods in health & social care: academic/user-led organisation partnerships as a response to changing research environments
Funder: Economic and Social Research Council

Abstract: Contemporary research environments should be informed by, respond to the needs of, and foster collaborations with communities and citizens [1]. While the theory and practice of participatory research has progressed through, for example, mandatory requirements and institutional norms in the field of health services research [2-6], recent evidence suggests research methodologies have not evolved sufficiently to ensure users and citizens regularly and meaningfully contribute to research agendas, design and practice [7-15]. These shortcomings have emerged at a time when austerity has challenged the existence and undermined the activities of the user-led organisations upon which universities and researchers often rely to facilitate meaningful participatory research [16]. This presents two inter-related priorities requiring methodological innovation: firstly, the generation and piloting of novel methodologies to better support the translation of participatory theory into practice and, secondly, proof of concept studies conducted jointly by researchers and user-led organisations to evidence the benefits and challenges of these methodologies in ways which enhance the longer-term structures and practices of these essential partnerships. This 16 month proof of concept project pursues these twin challenges through a partnership between social scientists at King's College London and Shaping Our Lives, a national user-led organisation specialising in the inclusive involvement of Disabled people and people marginalised due to other and intersecting social and personal characteristics. Shaping Our Lives have been awarded almost £200,000 over the next four years by the National Lottery Community Fund to co-design (with their members and partners) new services to promote and facilitate meaningful involvement in research, local government planning and policy-making, as well as providing a sustainable means through which Shaping Our Lives can form partnerships with researchers and universities. Together we propose to pilot a novel methodology which seeks to facilitate and improve such co-design endeavours [17]. Our project is principally concerned with exploring whether a methodological innovation derived from Elinor Ostrom's Nobel Prize-winning analysis of collaborative group working [18-19] can both enhance the co-design of services designed with and for service users and also improve participatory research practice. By using collaborative ethnography to conduct a Participatory Action Research project of our process of adapting, implementing and evaluating this innovation we will gather insights into the methodological challenges involved in such ways of working which will strengthen future partnerships between researchers and user-led organisations. Our research objectives are to: 1. Generate and pilot a novel methodology to better support the translation of participatory theory into practice 2. Evidence the benefits and challenges of this methodology in ways which enhance the longer-term structures and practices of partnerships formed by and with user-led organisations 3. Inform the co-design of new services - ready for subsequent national implementation - to promote, facilitate and sustain meaningful involvement in research and policy-making 4. Disseminate our findings and share our learning through an open access peer-reviewed journal article and a public report 5. Use this learning to prepare an application for further ESRC funding to study the longer-term impact of the co-designed services and the continued adaptation, application and refinement of this methodology as these services are implemented nationally 6. Consolidate a non-hierarchical, mutually supportive and sustainable partnership between King's College London and Shaping Our Lives.

Lay abstract: 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.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE