Professor, Department of Primary Care & Population Health, UCL, LondonPPI Co-ordinator, Co-Ordinating Centre, Dementias & Neurodegenerative Diseases Research Network (DeNDRoN), LondonProfessor, Preston MND Care & Research Centre, Royal Preston Hospital, Preston, UK.
Health Expect. 2013 Dec;16(4):351-61. doi: 10.1111/j.1369-7625.2011.00728.x. Epub 2011 Sep 8.
(i) To describe patient and public involvement (PPI) in a network promoting research in dementia and neurodegenerative diseases, in terms of activity at the different stages of the research cycle and within the different levels of the research network. (ii) To use case studies to try and answer the question: what benefits (if any) does PPI in research bring to the research process?
PPI in health research is a central part of government policy, but the evidence base underpinning it needs strengthening. PPI allows exploration of feasibility, acceptability and relevance of hypotheses, assists in the precise definition of research questions and increases accrual to studies. However, the measurement of outcomes is methodologically difficult, because the impact of lay researchers may occur through team interactions and be difficult to untangle from the efforts of professional researchers. Opportunities for PPI in rapidly progressive diseases may be limited, and involvement of people with marked cognitive impairment is particularly challenging.
(i) Description of PPI within the DeNDRoN network. (ii) Case studies of three research projects which asked for extra help from centrally organized PPI.
PPI in research projects on the DeNDRoN portfolio may function at different levels, occurring at project, local research network and national level. Case studies of three research projects show different roles for PPI in research and different functions for centrally organized PPI, including contribution to remedial action in studies that are not recruiting to target, solving problems because of the complexity and sensitivity of the research topic, and linking researchers to PPI resources.
The case studies suggest that centrally organized PPI can have 'diagnostic' and remedial functions in studies that are struggling to recruit and serve as reinforcement for study-level PPI in the complex and sensitive research topics that are typical in neurodegenerative diseases research. PPI may be actively sought by researchers, but the infrastructure of PPI is not yet so widespread in the research community that lay researchers are easy to find; a centrally organized PPI resource can assist in this situation.
（i）描述在一个促进痴呆症和神经退行性疾病研究的网络中，患者和公众参与（PPI）在研究周期的不同阶段以及研究网络的不同层次上的活动。（ii）使用案例研究来尝试回答这个问题：PPI 在研究中带来了什么好处（如果有的话）？
在健康研究中，PPI 是政府政策的核心部分，但支持它的证据基础需要加强。PPI 允许探索假设的可行性、可接受性和相关性，有助于精确定义研究问题，并增加研究的入组率。然而，结果的测量在方法上具有挑战性，因为外行研究人员的影响可能通过团队互动产生，并且难以从专业研究人员的努力中分离出来。在快速进展的疾病中，PPI 的机会可能有限，并且涉及认知障碍明显的人尤其具有挑战性。
（i）描述 DeNDRoN 网络中的 PPI。（ii）三个请求中央组织 PPI 额外帮助的研究项目的案例研究。
DeNDRoN 项目组合中的研究项目中的 PPI 可能在不同层次上运作，发生在项目、当地研究网络和国家层面。三个研究项目的案例研究表明，PPI 在研究中的作用不同，中央组织的 PPI 具有不同的功能，包括为未达到目标招募的研究提供补救措施、解决因研究主题的复杂性和敏感性而产生的问题，以及将研究人员与 PPI 资源联系起来。
案例研究表明，中央组织的 PPI 可以在难以招募的研究中发挥“诊断”和补救作用，并作为研究中 PPI 的强化，在神经退行性疾病研究中典型的复杂和敏感研究主题中。研究人员可能会主动寻求 PPI，但研究界的 PPI 基础设施尚未广泛到可以轻松找到外行研究人员的程度；中央组织的 PPI 资源可以在这种情况下提供帮助。
