Green Gill
School of Health & Human Sciences, University of Essex, Colchester, UK.
Res Involv Engagem. 2016 Aug 17;2:28. doi: 10.1186/s40900-016-0042-y. eCollection 2016.
Public involvement is required for applied health research funded in the UK. One of the largest funders, the National Institute of Health Research (NIHR), makes it clear that it values the knowledge of patients and the public. As a result, there are now many resources to make sure that the public voice is included in decision-making about research. However, there is concern that the public voice still has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It looks at how much power and impact patients and members of the public have about research by asking: How do the public contribute to deciding which research areas and which research projects should be funded? How do they influence how the research is carried out? The article argues that there is evidence that the public voice is present in research decision-making. However, there is less evidence of a change in the power dynamic between the scientific research community and the public. The public involved in research are not always equal partners. The scientific research community still has the loudest voice and patients and the public do not always feel sufficiently empowered to challenge it.
Public involvement in applied health research is a pre-requisite for funding from many funding bodies. In particular the National Institute of Health Research (NIHR) in the UK, clearly states that it values lay knowledge and there is an expectation that members of the public will participate as research partners in research. As a result a large public involvement infrastructure has emerged to facilitate this. However, there is concern that despite the flurry of activity in promoting public involvement, lay knowledge is marginalised and has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It discusses the meaning of power and models of public involvement and examines the development of public involvement in applied health research. It identifies public involvement in a range of decision-making: identifying priority areas for commissioning research; making decisions about which projects are funded; decisions about details of research design. Whilst there is evidence that the public voice is present in the composition of research proposals submitted to NIHR and in the decision-making about which projects are funded and how they are carried out, there is less evidence of a change in the power dynamic manifest in social relations between the scientific research community and the public. As a result the biomedical model remains dominant and largely unchallenged in research decision-making.
英国资助的应用健康研究需要公众参与。最大的资助者之一，英国国家卫生研究院（NIHR）明确表示重视患者和公众的知识。因此，现在有许多资源来确保公众的声音能纳入研究决策。然而，有人担心公众的声音对研究决策的影响仍然有限。本文探讨权力在多大程度上从科研界转移到了公众手中？通过询问以下问题来研究患者和公众对研究有多大的权力和影响力：公众如何参与决定哪些研究领域和哪些研究项目应获得资助？他们如何影响研究的开展方式？文章认为，有证据表明公众的声音存在于研究决策中。然而，科研界与公众之间权力动态变化的证据较少。参与研究的公众并不总是平等的伙伴。科研界的声音仍然最大，患者和公众并不总是觉得有足够的权力去挑战它。
公众参与应用健康研究是许多资助机构提供资金的前提条件。特别是英国的国家卫生研究院（NIHR）明确表示重视外行知识，并期望公众作为研究伙伴参与研究。因此，已经出现了庞大的公众参与基础设施来促进这一点。然而，有人担心，尽管在促进公众参与方面活动频繁，但外行知识被边缘化，对研究决策的影响有限。本文探讨权力在多大程度上从科研界转移到了公众手中？它讨论了权力的含义和公众参与的模式，并审视了应用健康研究中公众参与的发展。它确定了公众在一系列决策中的参与：确定委托研究的优先领域；决定资助哪些项目；关于研究设计细节的决策。虽然有证据表明公众的声音存在于提交给NIHR的研究提案的构成中，以及在关于资助哪些项目以及如何开展这些项目的决策中，但科研界与公众之间社会关系中体现的权力动态变化的证据较少。结果，生物医学模式在研究决策中仍然占主导地位，且基本未受到挑战。
