PDF(Sci-hub)
Abstract：
UNASSIGNED: Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people\'s ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research.
UNASSIGNED: Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers (including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents\' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p < 0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients\' and carers\' contributions to priority setting. When discussions about a project\'s remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.
UNASSIGNED: Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers (including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents\' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p < 0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients\' and carers\' contributions to priority setting. When discussions about a project\'s remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.
摘要：
■医护人员希望在各种医疗保健领域更多地听取患者及其护理人员的意见。这可以包括选择医学研究的主题。我们研究了患者和护理人员如何帮助选择有关I型糖尿病的研究主题。我们的目标是找出，以及为什么,研究人员经常拒绝他们的选择。我们研究了一个将患者聚集在一起的项目，护理人员和医护人员选择研究1型糖尿病的主题。该小组首先询问患者，护理人员和医护人员为研究问题提出建议。但是该小组必须遵循有关什么是好的研究问题的规则。有些人的想法不算是好的研究问题，他们一开始就被拒绝了。我们研究了谁最有可能在一开始就拒绝他们的想法。我们发现患者和护理人员最有可能拒绝建议。然后我们详细查看了被拒绝的问题。他们主要是关于治疗糖尿病，预防糖尿病并了解糖尿病的工作原理。还有一些关于获得药物和护理质量的问题。研究人员应该向患者和护理人员寻求帮助，从这些项目开始就确定什么是好的研究问题。我们还应该考虑什么可能会妨碍患者和护理人员在研究中产生更大的影响。
■背景技术患者和护理人员越来越多地参与决定医学研究的主题。然而,到目前为止,迄今为止，由于已发表的研究报告和评估不佳，因此很难准确了解这种参与的影响。这项研究旨在探讨如何建立患者的伙伴关系，看护者,医疗保健专业人员和组织确定了未来研究的问题，以及为什么患者和护理人员对这一过程的影响有限。方法在合作过程的第一阶段,相关服务用户和提供者(包括患者，看护者,医疗保健专业人员和志愿组织)被邀请提交关于1型糖尿病治疗的建议研究问题，通过全国在线和纸质调查。这种伙伴关系遵循正式的协议，定义了一个可研究的问题。这意味着许多受访者认为研究问题在开始时就被拒绝了。我们分析了调查提交的内容，以找出哪些受访者最有可能拒绝他们的建议，以及这些建议是关于什么的。结果583名受访者提交了1143个建议的研究问题，其中249人(21.8%)在第一阶段被拒绝。具有这种长期状况的生活经验的受访者（患者和护理人员）比没有生活经验的受访者更有可能提交将被拒绝的研究问题（35.6vs.16.5%；p<0.0005）。在患者和护理人员提交的被拒绝的问题中，有几个关键主题:关于治愈的问题，原因和预防，了解疾病，医疗政策和经济学。结论在本案例研究中，关于什么构成可研究问题的早期决定限制了患者和护理人员对优先级设置的贡献。当有关项目的汇款的讨论在服务用户参与之前进行时，研究人员有可能扭曲参与的潜在影响。影响评估不仅应考虑患者和护理人员对研究的差异，还应考虑他们在没有系统性障碍的情况下可能产生的差异。我们建议旨在让患者和护理人员尽早参与确定研究问题的举措，包括决定如何以及为什么选择或拒绝建议的研究问题。
■背景技术患者和护理人员越来越多地参与决定医学研究的主题。然而,到目前为止,迄今为止，由于已发表的研究报告和评估不佳，因此很难准确了解这种参与的影响。这项研究旨在探讨如何建立患者的伙伴关系，看护者,医疗保健专业人员和组织确定了未来研究的问题，以及为什么患者和护理人员对这一过程的影响有限。方法在合作过程的第一阶段,相关服务用户和提供者(包括患者，看护者,医疗保健专业人员和志愿组织)被邀请提交关于1型糖尿病治疗的建议研究问题，通过全国在线和纸质调查。这种伙伴关系遵循正式的协议，定义了一个可研究的问题。这意味着许多受访者认为研究问题在开始时就被拒绝了。我们分析了调查提交的内容，以找出哪些受访者最有可能拒绝他们的建议，以及这些建议是关于什么的。结果583名受访者提交了1143个建议的研究问题，其中249人(21.8%)在第一阶段被拒绝。具有这种长期状况的生活经验的受访者（患者和护理人员）比没有生活经验的受访者更有可能提交将被拒绝的研究问题（35.6vs.16.5%；p<0.0005）。在患者和护理人员提交的被拒绝的问题中，有几个关键主题:关于治愈的问题，原因和预防，了解疾病，医疗政策和经济学。结论在本案例研究中，关于什么构成可研究问题的早期决定限制了患者和护理人员对优先级设置的贡献。当有关项目的汇款的讨论在服务用户参与之前进行时，研究人员有可能扭曲参与的潜在影响。影响评估不仅应考虑患者和护理人员对研究的差异，还应考虑他们在没有系统性障碍的情况下可能产生的差异。我们建议旨在让患者和护理人员尽早参与确定研究问题的举措，包括决定如何以及为什么选择或拒绝建议的研究问题。
