是一个合作性的工作,和一个临床的研究trial particularly so. From the PhD student to the principal investigator, from the lab technician to the research nurse, from the trial manager to the clinical lead – everyone influences the success of a study. There is, of course, one group of people without whom no clinical trial could take place: the patients and public who participate in studies. However, if research teams build public involvement into their work, patients and the general public can be more than participants in a trial – they can be collaborators too.
PPI in research is about working together
Patient and public involvement in research (often shortened to PPI) is when“research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”.There are lots of ways for the public to get involved in research, and they can have their say at all stages, from setting research topics and helping collect data, to interpreting results.
PPI improves research
让患者参与研究的最重要原因之一是通过他们的生活经验of a condition, patients can provide expertise from which a research team can benefit. They can tell us their research priorities based on the aspects of their lives that are the hardest to manage and how to improve a trial protocol by explaining a day in the life of a patient. By telling us how to write good patient facing materials that communicate in a patient friendly way PPI can in turn improve recruitment and retention.
Taking recruitment and retention rate as an example, a2017 study查看来自UKS健康技术评估计划资助的151项随机对照试验的招聘成功发现，只有56％的试验招募了参与者的目标人数，平均保留率为89％。显然有一些工作要做，并且research is beginningto show how patients can be key to improving recruitment and retention rates in health and social care research.
Patients can be key to improving recruitment and retention rates in health and social care research
In a rare disease study started in 2014, researchers were worried they would struggle to recruit participants because the treatment they were testing would have limited beneficial effects for trial participants (it would likely be of greater benefit for those earlier on in disease progression). The researchers consulted with a patient group who told them that if they could communicate that taking part in the trial would prevent younger people experiencing the severity of symptoms the adults had endured, that altruistic appeal would be a big motivation for taking part.
In another of our studies atUCLH’s Biomedical Research Centre，一名研究小组研究南亚种族人的痴呆危险因素的研究小组与当地南亚社区的一群老年人会面。他们了解到，与之交谈的许多人都不认为痴呆症是影响大脑的疾病，在某些情况下，痴呆症症状附有污名。这一发现促使团队改变了他们在诊断时收集的数据进行的统计分析的类型。团队知道，诊断的延迟将受到寻求帮助的延迟的影响，这需要纳入分析。
PPI motivates research teams
These are just some examples of how patients and the public can offer insights that improve research, but there are other reasons to start talking to patients and the public about your work. The more we talk to the public about scientific research, the greater the trust we build. Not only this, but working with the public is also a great motivation for researchers – many scientists who spend much of their time in the lab or at computers can get a huge boost from meeting with the beneficiaries of their research and seeing how their work is positively impacting lives.
开始！
如果您想了解有关公众参与的更多信息，那么一个很好的起点是NIHR’s Involve website. Manyhealth charitiesalso have great public involvement resources. For UK based scientists, if you are part of a university, you may also be part of one of the NIHR’s 20生物医学研究中心, which all have a dedicated PPI team.
当我们庆祝临床试验日时，这是一个好时机，想起您试图帮助您的人也希望为您提供帮助。
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