Staniszewska Sophie, Jones Nicola, Newburn Mary, Marshall Shanit
RCN Institute, Radcliffe Infirmary, Oxford, UK.
Health Expect. 2007 Jun;10(2):173-83. doi: 10.1111/j.1369-7625.2007.00436.x.
To involve users in the development of a research bid to examine parents' experiences of having a pre-term baby, and to examine the barriers, enablers and impacts of user involvement.
A mainly collaborative approach to user involvement was adopted, although different types of involvement were evident at different stages of the project. Users' experiences and perspectives provided the focus for the regular meetings which underpinned the writing of the research bid. The researcher acted as a facilitator in the development of the bid, with input from users and the wider advisory group.
User involvement had an important impact on the development of the research aims, methods and on ethical aspects. Through careful collaboration a research bid was produced which was rooted in users' experiences, whilst also addressing key research questions. Key enablers for involvement included good working relationships, funding for the lead researchers time. Barriers included lack of financial support for users, the time-consuming nature of involvement and the language of research.
If user involvement remains an international policy imperative with little if any support at the vital stage of bid development, policy-makers, service user organizations, researchers, health service providers and commissioners will need to recognize the limited nature of involvement that may result and the impact this would have on the evidence base. Researchers will need to recognize the resource implications of involvement at this point, and user groups will need to decide whether to participate when there is the greatest chance of influencing research but little or no funding.
让用户参与一项研究标书的制定，该研究旨在调查父母生育早产儿的经历，并探究用户参与的障碍、促进因素及影响。
采用了一种主要为协作式的用户参与方法，不过在项目的不同阶段，不同类型的参与方式也很明显。用户的经历和观点为定期会议提供了重点内容，这些会议为研究标书的撰写奠定了基础。在标书制定过程中，研究人员担任协调人，吸收用户及更广泛咨询小组的意见。
用户参与对研究目标、方法以及伦理方面的发展产生了重要影响。通过精心协作，制定出了一份基于用户经历且同时解决关键研究问题的研究标书。参与的关键促进因素包括良好的工作关系、为首席研究人员提供时间方面的资金支持。障碍包括缺乏对用户的资金支持、参与过程耗时以及研究语言问题。
如果用户参与仍是一项国际政策要求，但在标书制定这一关键阶段几乎得不到任何支持，那么政策制定者、服务用户组织、研究人员、医疗服务提供者和委托方将需要认识到可能导致的参与的有限性以及这对证据基础的影响。研究人员此时需要认识到参与所涉及的资源问题，而用户群体则需要在最有可能影响研究但资金很少或没有资金的情况下决定是否参与。
