Tomlinson Justine, Medlinskiene Kristina, Cheong V-Lin, Khan Sarah, Fylan Beth
1Medicine Optimisation Research Group, School of Pharmacy and Medical Sciences, University of Bradford, Bradford, UK.
2Medicine Management and Pharmacy Services, Leeds Teaching Hospitals NHS Trust, Leeds, UK.
Res Involv Engagem. 2019 Aug 16;5:23. doi: 10.1186/s40900-019-0155-1. eCollection 2019.
Evidence shows that public and patient involvement in research has a positive effect on its quality and end-results. Thus, public and patient involvement in all stages of research is becoming commonplace. There are limited detailed examples however, that describe how to make this possible, especially for those doing PhD research. Doctoral researchers are often new to research practice or have limited experience and are often bound by strict time and financial constraints. It is also not usually a requirement of the award to involve public and patients in their research. Hence, they may not feel confident or motivated to involve or engage with public and patients during their research. We, four doctoral researchers, share examples from our own research studies that have included different approaches to public and patient involvement. Two studies formed public and patient advisory groups who helped design the research questions, data collection tools and recruitment methods. One enlisted the help of an online public and patient panel from a local hospital. A different study worked with patients from an established group to help define key medical words. We did face some challenges, such as the need to develop good group work skills and to apply for grants to cover reimbursement, but we all found it beneficial to involve patients in our studies. We noticed a positive effect on each study's progression and an improvement in our own self-esteem. In addition, having public and patient involvement helped reduce the isolation we felt as doctoral researchers. Thus, we strongly encourage more doctoral researchers to involve public and patients in their studies.
Public and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings.We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies.The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.
有证据表明，公众和患者参与研究对研究质量和最终成果有积极影响。因此，公众和患者参与研究的各个阶段正变得越来越普遍。然而，详细描述如何实现这一点的例子有限，尤其是对于那些正在进行博士研究的人来说。博士研究生通常对研究实践并不熟悉，或者经验有限，而且往往受到严格的时间和经济限制。在他们的研究中让公众和患者参与通常也不是获得学位的要求。因此，他们在研究过程中可能没有信心或动力让公众和患者参与进来。我们四位博士研究生分享了我们自己研究中的例子，这些研究采用了不同的公众和患者参与方式。两项研究成立了公众和患者咨询小组，他们帮助设计研究问题、数据收集工具和招募方法。一项研究寻求当地一家医院在线公众和患者小组的帮助。另一项不同的研究与一个既定群体的患者合作，以帮助定义关键医学术语。我们确实面临一些挑战，比如需要培养良好的团队合作技能以及申请资助以支付报销费用，但我们都发现让患者参与我们的研究是有益的。我们注意到这对每项研究的进展都有积极影响，也提升了我们自己的自尊心。此外，公众和患者的参与有助于减少我们作为博士研究生所感受到的孤立感。因此，我们强烈鼓励更多的博士研究生让公众和患者参与他们的研究。
公众和患者参与（PPI）已被证明对健康和社会护理研究有积极影响。然而，缺乏足够的例子来描述如何实施有效的PPI，尤其是在博士研究中。因此，刚开始从事研究或经验有限的博士研究生可能会因在研究中推动PPI而感到气馁。本文旨在详细描述和讨论四位博士研究生在从研究设计到研究结果传播的不同阶段纳入PPI所采用的方法。我们旨在告知其他博士研究生我们在PPI方面所面临的挑战和限制。通过这些，我们分享在博士研究期间推动PPI的实用建议。四个案例研究的描述表明，PPI可以在博士研究的各个阶段纳入。这对我们的研究进展、研究者的自尊心产生了有益影响，最后，有助于缓解博士研究期间研究者的孤立感。
