What are the impacts of user involvement in health and social care research and how can they be measured?

使用卫生和社会保健服务的人可以提供与临床医生、决策者和学术研究人员不同的研究观点。让服务使用者参与研究现在是政府政策的优先事项，也是许多资助研究的组织所要求的。用户参与（UI）可以发生在研究的所有阶段，包括：确定和优先考虑研究问题，设计和开展研究，考虑研究结果对服务的影响，并确保结果影响实践和未来的研究（Chalmers, 1995； Hanley等人，2004）。然而，尽管在研究界有相当多的支持，一些人认为它的影响是有限的或难以确定的。评论人士还认为，服务使用者参与研究可能与代表性、偏见、质量和成本增加等问题有关。其他领域也有证据表明，参与官方决策过程会对服务使用者产生负面影响(Langston et al ., 2005； O？Donnell & Entwistle, 2004；Ziersch & Baum, 2004)。因此，需要可靠的方法来评估UI在研究中的影响。本项目旨在开发和测试实现这一目标的方法。该项目将审查现有文献，以描述对UI在研究中的价值的不同观点，并确定已经知道的关于它可能产生的影响。例如，让服务使用者参与研究可能导致测量的结果与患者更相关，并帮助人们发展新技能。我们还将试图确定似乎与这些影响有因果关系的因素（例如，是否询问服务用户他们看重哪些结果），以及过去衡量和/或评估这些影响的方式。然后，我们将对研究资助者、研究人员和服务用户进行调查，以更深入地探索与其他研究价值（例如，物有所值）相比，UI在研究中的价值的共识和冲突领域，并考虑如何管理价值观之间的冲突。然后，我们将使用所有这些信息来制定如何评估UI在研究中的影响的指南，并在少量试点研究中进行测试。该项目还将制定标准，以评估用户参与研究的方法，以帮助研究人员最大限度地发挥用户界面在研究中的积极影响，并避免不利影响。

People who use health and social care services can provide different perspectives on research from those of clinicians, policy makers and academic researchers. Involving service users in research is now a priority for government policy and is required by many organisations that fund research. User involvement (UI) can occur at all stages of research, including: identifying and prioritising research questions, designing and conducting research, considering the implications of findings for services and ensuring results influence practice and future research (Chalmers, 1995; Hanley, et. al. 2004). However, whilst there is considerable support in the research community some people argue that its impacts are limited or difficult to identify. Commentators have also argued that the involvement of service users in research can be associated with problems of representativeness, bias, quality and increased cost. There is also evidence from other fields that getting involved in official decision-making processes can have negative impacts on service users(Langston et al, 2005; O?Donnell & Entwistle, 2004; Ziersch & Baum, 2004). Robust methods to assess the impact of UI in research are therefore needed. This project aims to develop and test methods for doing this. The project will review existing literature to describe different perspectives on the value of UI in research and identify what is already known about the impacts it can have. For example, involving service users in research could result in the outcomes that are measured being more relevant to patients, and help people develop new skills. We will also try to identify factors that seem to be causally linked to these impacts (for example, whether service users were asked which outcomes they valued) and ways in which these impacts have been measured and/or assessed in the past. We will then conduct a survey of funders of research, researchers and service users to explore in more depth areas of consensus and conflicts about the value of UI in research compared to other research values (for example, value for money) and consider how conflicts between values might be managed. We will then use all this information to develop guidance on how to assess the impact of UI in research and test this in a small number of pilot studies. The project will also produce standards against which approaches to user involvement in research can be assessed to help researchers maximise positive impacts of UI in research and avoid adverse effects.