Hensman-Crook Amanda, Farquharson Lois, Truman Juliette, Angell Catherine
Bournemouth University, Bournemouth, UK.
Res Involv Engagem. 2024 Sep 30;10(1):100. doi: 10.1186/s40900-024-00610-1.
Public and patient involvement is critical to ensure that research is relevant and addresses what matters most to the person through co-production. Involvement at the design stage where ideas for research are developed prior to formal ethical approval, can positively influence the direction of research design, methods, and outcomes. Although ethical approval is not required at this stage, being ethically conscious is imperative to prevent unwarranted unethical practices. To ensure this, the public and patient intervention at the design stage of a doctoral research project was benchmarked against Pandya-Woods 10 ethically conscious standards and the INVOLVE values and principles framework. Ethical approval was also gained for publication.
Patient and public involvement was undertaken with two diverse patient and public groups as an agenda item in their regular Teams meeting. Thoughts on the research project, the timeline, what matters most to the individuals in the group with regarding the design and outcomes from the research, the best method for data collection for public research, and next steps were discussed.
Public and patient involvement had a positive influence on the design and outcomes of a doctoral research proposal and held the researcher accountable for impact of the research on the public. Positive changes to the research from working with public and patients exploring 'what matters to you' included: An ontological change in the way that the research was conducted, identification of some main themes to run as a thread throughout the research, development of content for an international scoping review, identification of the best method for data collection for patient research, and accountability of the researcher to write a plain English summary at the beginning of each thesis chapter, and a summary report at the end for dissemination.
公众和患者参与对于确保研究具有相关性并通过共同生产解决对个人最重要的问题至关重要。在正式伦理批准之前开展研究想法的设计阶段参与，可以对研究设计、方法和结果的方向产生积极影响。尽管此阶段不需要伦理批准，但保持伦理意识对于防止不必要的不道德行为至关重要。为确保这一点，将博士研究项目设计阶段的公众和患者干预与潘迪亚 - 伍兹的10条伦理意识标准以及“参与”价值观和原则框架进行了对比。论文发表也获得了伦理批准。
患者和公众参与是在两个不同的患者和公众群体的定期团队会议上作为议程项目进行的。讨论了对研究项目的想法、时间表、对于组内个人而言在研究设计和结果方面最重要的事情、公共研究数据收集的最佳方法以及后续步骤。
公众和患者参与对博士研究提案的设计和结果产生了积极影响，并使研究人员对研究对公众的影响负责。与公众和患者探讨“对你来说重要的事情”后，研究发生的积极变化包括：研究开展方式的本体论转变、确定贯穿整个研究的一些主要主题、为国际范围综述制定内容、确定患者研究数据收集的最佳方法，以及研究人员有责任在每章论文开头撰写通俗易懂的英文摘要，并在结尾撰写一份总结报告以供传播。
