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

该项目将试验并为研究人员、残疾人和其他卫生和社会护理服务使用者建立伙伴关系的新方法，以便使研究能够(1)根据服务使用者的经验形成和提供信息(2)更好地满足服务使用者的需求(3)对社会产生积极影响。传统上，研究是一个单向的过程——研究人员提出他们自己的问题，然后试图回答这些问题。最近，人们认为，如果研究人员想要提出并回答最重要的问题，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，许多研究人员在与服务用户合作方面遇到了困难，或者没有尝试过。我们的项目汇集了来自伦敦国王学院和“塑造我们的生活”（一个由残疾人领导并为残疾人服务的全国性组织）的社会科学家，以实现两个目标：(1)合作开发新的服务，支持残疾人和服务使用者更多地参与研究；(2)测试一种新的合作方式，帮助研究人员和服务使用者更公平、更有效地合作。“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，最近获得了国家彩票4年的资金（近20万英镑），用于利用这个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政策制定，发出自己的声音并产生影响。我们的项目将允许“塑造我们的生活”和伦敦国王学院合作，研究由彩票资助的项目的前16个月，届时新的服务将被设计出来。我们将以诺贝尔奖得主、社会科学家埃莉诺•奥斯特罗姆（Elinor Ostrom）的研究成果为基础，测试一种新的合作方式。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），并发现了8条原则，决定了团体是否能很好地合作。这些原则涉及如下事项：确定需要做什么以及由谁来做；创建规则;确保每个人都做出公平的贡献；以及如何解决冲突。这些似乎是常识，但团队通常不会自然地做到这一点，因此效率较低；这些原则在服务使用者和研究人员之间的合作关系中也未经检验。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为残疾人和服务使用者创造新服务的努力。这包括雇用一名研究人员，并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，使其符合目的，并将其应用于彩票资助的项目。研究人员将参与这一过程，撰写日常笔记并采访团队成员；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，而是通过合作改变和研究来了解和改善社会世界。到最后，我们将：(1)为残疾人和其他服务使用者开发参与研究的新途径，让他们的声音被听到并产生影响(2)测试合作伙伴关系工作的新方法(3)撰写学术论文和公开报告分享我们的经验(4)利用这些经验编写申请ESRC资助的申请，以研究新服务的国家实施情况(5)加强我们的合作关系。

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.