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

该项目将为研究人员、残疾人和其他卫生和社会护理服务用户测试和创造新的合作方式，以便研究能够（1）根据服务用户的经验进行塑造和通报（2）更好地满足服务用户的需求（3）对社会产生积极影响。传统上，研究是一个单向的过程--研究人员提出自己的问题，然后试图回答这些问题。最近，人们认为，如果研究人员想提出和回答最重要的问题，他们必须与那些对所研究的问题有亲身经历的人合作。这似乎是常识，但与传统的研究方式相比，这是一个巨大的变化。这带来了新的挑战。例如，服务用户如何参与研究？研究人员和服务用户合作的最佳方式是什么？这些问题看起来很简单，但研究表明，许多研究人员很难或不尝试与服务用户合作。我们的项目汇集了来自伦敦国王学院和塑造我们的生活-一个由残疾人领导和为残疾人服务的国家组织-的社会科学家，以实现两个目标：（1）合作开发新的服务，以支持残疾人和服务使用者更多地参与研究，以及（2）测试一种新的伙伴关系方法，帮助研究人员和服务用户更公平有效地合作。塑造我们的生活创建了一个由残疾人和服务用户领导的组织网络，最近，国家彩票公司提供了4年的资金（近20万英镑），用于使用该网络为残疾人设计新的服务。这些服务将使残疾人和其他服务使用者更容易参与研究和决策，让他们的声音得到倾听并产生影响。我们的项目将允许塑造我们的生活和国王学院伦敦合作研究的前16个月的彩票资助的项目时，新的服务将被设计。我们将测试一种基于社会科学家埃莉诺·奥斯特罗姆获得诺贝尔奖的工作的新的伙伴关系工作方法。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8项原则决定了团体是否能很好地合作。这些原则涉及以下事项：确定需要做什么以及由谁来做;制定规则;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;这些原则也没有在服务用户和研究人员之间的伙伴关系中得到检验。因此，塑造我们的生活和伦敦国王学院将共同调查这些原则是否支持与残疾人和服务用户一起创造新服务的努力。这包括雇用一名研究人员，支付和支持残疾人和服务使用者作为共同研究人员发挥积极作用。我们将共同调整这些原则，使其适合目的，并将其应用于彩票资助的项目。研究人员将参与这一过程，每天写笔记，采访团队成员;每月的项目会议将把团队聚集在一起，反思事情的进展情况。我们希望摆脱传统的研究方式，而是通过改变和研究伙伴关系来了解和改善社会世界。到最后，我们将拥有：（1）为残疾人和其他服务用户开发了参与研究的新方法，让他们的声音被听到并产生影响（2）测试了一种新的伙伴关系工作方法（3）撰写了一篇学术论文和公开报告，以分享我们的学习成果（4）利用这一学习成果撰写了ESRC资助的申请，以研究新服务的国家实施情况（5）加强了我们的伙伴关系。

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.