Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
Northumbria Healthcare NHS Foundation Trust, North Shields, UK.
Health Expect. 2019 Jun;22(3):465-474. doi: 10.1111/hex.12870. Epub 2019 Feb 15.
Patient and public involvement in research includes non-academics working with researchers, on activities from consultative tasks, to joint working, and on user-led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large-scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face-to-face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.
患者和公众参与研究包括非专业人员与研究人员一起参与活动，从咨询任务到联合工作，再到用户主导的倡议。卫生和社会保健资助机构要求参与研究项目。目前的一个争论焦点是，人们认为缺乏实证“证据”来证明参与对研究质量的影响。有人还认为，需要更全面地了解研究人员和参与人员之间的工作关系。这些领域开始得到报道，但很少有研究涉及参与健康研究的年轻人。本研究描述了成年学者和年轻人一起参与一个大型英国健康研究计划的经验。研究采用定性访谈和焦点小组方法，旨在探讨参与者对他们共同工作的过程和结果的看法。研究结果表明，循环、动态和灵活的方法非常重要。促进因素包括有明确的谈判和促进机制、利益相关者对“可能的艺术”有愿景，以及核心的面对面工作机会。需要的是继续讨论与年轻人合作的挑战和好处，与年幼的儿童和成年人区分开来，理解这项工作的价值，而无需年轻人不得不以某种方式“证明”自己。参与依赖于复杂的社会过程。这项工作支持这样一种观点，即需要更好地了解如何使关键过程能够实现，以及参与能够实现什么，现在需要更多地了解参与的实现过程。
