The power of language: how to bridge the gap between healthcare research and patients – a scoping review

The value of patient involvement to the design, conduct, and outcomes of healthcare research is increasingly being recognized. Patient involvement also provides greater patient accessibility and contribution to research. However, the use of inaccessible and technical language when communicating with patients is a barrier to effective patient involvement. We analyzed peer-reviewed and gray literature on how language is used in communication between healthcare researchers and patients. We used this analysis to generate a set of recommendations for healthcare researchers about using more inclusive and accessible language when involving patients in research. This scoping review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for Scoping Review (PRISMA-ScR) checklist. Four major themes about the use of language were developed from the literature analysis and were used to develop the set of recommendations. These recommendations include guidance on using standardized terminology and plain language when involving patients in healthcare research. They also discuss the implementation of co-development practices, patient support initiatives, and researcher training, as well as ways to improve emotional awareness and the need for greater equality, diversity, and inclusion. The use of inclusive, empathetic, and clear language can encourage patients to be involved in research and, once they are involved, make them feel like equal, empowered, and valued partners. Working toward developing processes and guidelines for the use of language that enables an equal partnership between researchers and patients is critical. Patient and public involvement is when patients, carers, and the public are included as partners in all stages of healthcare research. Patient involvement has been shown to have a positive impact on people and on research itself, but researchers often use language that is complicated, confusing, or unsuitable for patients. This can lead to less meaningful patient involvement in research. Our work looked at two areas: (1) how using unsuitable language can be a barrier to effective and meaningful patient involvement; and (2) what can be done to help improve communication between healthcare researchers and patients. We started by finding out what has already been researched and published in these areas. We looked in medical journal databases for articles that were relevant to the topic. We also searched Google and the websites of relevant organizations. From looking at these sources, we found four common themes. These themes are: (1) lack of standardized terminology for patients involved in research; (2) consistent overuse of technical, scientific, and medical language; (3) positive outcomes of using language to show emotional understanding; and (4) language as a powerful tool for promoting diversity, equality, and inclusion of patients involved in research. Using these themes, we then developed seven recommendations to help improve how healthcare researchers and patients communicate with each other. These recommendations are: (1) using standardized terminology; (2) using plain language; (3) co-developing patient information; (4) providing patient training, mentoring, and support; (5) introducing researcher training; (6) having emotional awareness; and (7) improving equality, diversity, and inclusion. A graphical plain language summary can be found as Supplementary material for this article.

患者参与（patient involvement）对医疗健康研究的设计、实施与研究成果的价值，正日益得到学界认可。患者参与还能提升研究的患者可及性，并为研究贡献更多患者视角的价值。然而，在与患者沟通时使用晦涩难懂的专业术语，已成为有效开展患者参与工作的一大阻碍。本研究针对医疗健康研究者与患者间沟通中的语言使用情况，分析了同行评议文献（peer-reviewed literature）与灰色文献（gray literature），并基于该分析为医疗健康研究者制定了一套指南，旨在指导其在吸纳患者参与研究的过程中使用更具包容性、更易理解的语言。本范围综述（scoping review）遵循《系统综述与元分析首选报告条目（Preferred Reporting Items for Systematic Reviews and Meta-Analyses，PRISMA）》范围综述扩展版（PRISMA-ScR）核查清单进行撰写。本次文献分析共提炼出四大与语言使用相关的核心主题，并以此为基础形成了整套指南。该指南涵盖了吸纳患者参与医疗健康研究时，使用标准化术语与通俗语言（plain language）的相关指导规范，同时还探讨了共同开发实践、患者支持举措、研究者培训的落地路径，以及提升情感认知的方法，还有强化平等、多元与包容的必要性。使用兼具包容性、共情性与清晰性的语言，不仅能够鼓励患者参与研究，更能在其参与后使其感受到自身作为平等、赋权且受重视的伙伴的价值。致力于构建能够实现研究者与患者间平等伙伴关系的语言使用流程与指南，具有至关重要的意义。患者与公众参与（Patient and Public Involvement，PPI）指患者、护理者及社会公众作为伙伴，全程参与医疗健康研究的各个阶段。已有研究证实，患者参与对受试者个体与研究本身均能产生积极影响，但研究者往往会使用对患者而言过于复杂、费解或不适切的语言，此类不当用语会导致患者在研究中的参与缺乏实质意义。本研究聚焦两大方向：（1）不适切的语言如何成为阻碍有效且富有实质意义的患者参与的障碍；（2）可采取哪些措施以改善医疗健康研究者与患者间的沟通。本研究首先梳理了该领域已有的研究与发表成果，研究团队通过医学期刊数据库检索与主题相关的文献，同时借助谷歌（Google）搜索引擎及相关组织的官方网站进行补充检索。基于上述检索来源，本研究提炼出四大共性主题：（1）针对研究中参与的患者群体，缺乏标准化术语体系；（2）过度、持续地使用技术、科学与医学专业术语；（3）使用体现情感共情的语言可带来积极效果；（4）语言可作为促进参与研究的患者群体的多样性、平等与包容的有力工具。基于上述四大主题，本研究进一步制定了七项旨在改善医疗健康研究者与患者沟通的指南，具体如下：（1）使用标准化术语；（2）使用通俗语言；（3）共同开发患者信息资料；（4）提供患者培训、指导与支持；（5）开展研究者培训；（6）强化情感认知；（7）推进平等、多元与包容建设。本文的补充材料中包含一份图文并茂的通俗语言摘要。