Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities.
Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities.
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DOI：
10.1186/s13063-021-05451-x
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发表时间：
2021-07-28
期刊：
影响因子：
2.5
通讯作者：
Gillies K
中科院分区：
文献类型：
--
作者：
Goulao B;Bruhn H;Campbell M;Ramsay C;Gillies K
患者和公众参与在试验中越来越普遍，但其质量在许多情况下仍然存在差异。试验中的许多关键决策都涉及数字，但患者很少参与这些讨论。我们旨在了解患者和公众合作伙伴在参与研究的数字方面的经验和意见，并根据多个利益相关者，围绕患者和公众参与的试验中最重要的数字方面，讨论和确定优先事项。研究分为两个阶段：（1）通过在线平台招募患者和公共合作伙伴组成在线焦点小组，并使用归纳专题分析进行分析;（2）与英国和爱尔兰的利益攸关方举行在线优先事项确定会议，并遵循James Lind联盟的方法。预先选定的数字方面在会议之前介绍，并根据投票制度进行讨论和优先排序。在第一阶段，我们与患者和公共合作伙伴（n = 9）举行了两个焦点小组。我们在分析中确定了四个主题：“PPI在数字方面的决定因素”，“身份和角色”，“在数字方面涉及患者和公众的影响”。患者和公共合作伙伴认为，参与研究的数字方面很重要，应该得到促进，但有关这些方面的沟通需要更加清晰。与研究人员的环境和关系，包括讨论时间，支持提高知识和信心，明确的语言和定义以及信任。患者和公共合作伙伴认为他们的作用是带来一个局外人的角度来看，主要是在参与的假设和定量研究的传播感兴趣。他们认为，这可以提高透明度，并通过使参与更有意义来改善他们的经验。在第二阶段，我们确定了12个需要优先考虑的试验的数值方面。我们与14个利益相关者举行了一次优先事项设定会议，选择了患者和公众参与的三个优先数字方面：目标差异，结果解释和成本效益。与会者认为，应考虑到参与的所有方面及其沟通需要，以确保共同的理解，避免权力不平衡。我们的工作表明，通过首次评估患者和公众合作伙伴的经验和动机，并讨论和优先考虑哪些试验的数值方面对患者和公众贡献最重要，让他们参与试验的数值方面非常重要。我们的研究提供了一个平台，为未来的努力，以提高患者和公众参与试验和一组优先的未来研究重点。
Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners’ experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in. The study had two stages: (1) online focus groups with patient and public partners recruited via online platforms and analysed using inductive thematic analysis and (2) online priority setting meeting with UK- and Ireland-based stakeholders and following James Lind Alliance methodology. Pre-selected numerical aspects were introduced prior to the meeting and discussed and prioritised based on a voting system. In stage 1, we held two focus groups with patient and public partners (n = 9). We identified four themes in the analysis: “Determinants of PPI in numerical aspects”, “Identity and roles”, “Impact of involving patients and the public in numerical aspects”. Patient and public partners believed being involved in numerical aspects of research is important and should be facilitated, but communication about these aspects needs to be clearer. An environment and relationship with researchers that facilitates that will include time for discussion, support to improve knowledge and confidence, clear language and definitions and trust. Patient and public partners perceive their role as bringing an outsider perspective and were mainly interested in involvement in assumptions and dissemination of quantitative research. They believed this can lead to more transparency and improve their experience by making involvement more meaningful. In stage 2, we identified twelve numerical aspects of trials to be prioritised. We held a priority setting meeting with 14 stakeholders, which led to the selection of three priority numerical aspects in patient and public involvement: target differences, interpretation of results and cost-effectiveness. Participants felt all aspects should be considered for involvement and their communication needs to ensure a shared level of understanding to avoid power imbalances. Our work shows the importance of involving patient and public partners in numerical aspects of trials by assessing their experiences and motivations for the first time and discussing and prioritising which numerical aspects of trials are the most important for patients and the public to contribute to. Our research provides a platform for future efforts to improve patient and public involvement in trials and a prioritised set of future research foci.
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影响因子：
3.2
作者：
Dinh Bao Truong;Hoang Phu Doan;Rushton, Jonathan
通讯作者：
Rushton, Jonathan
影响因子：
2.9
作者：
de Wit, Maarten;Abma, Tineke;Kirwan, John
通讯作者：
Kirwan, John
影响因子：
2.5
作者：
Dudley, Louise;Gamble, Carrol;Young, Bridget
通讯作者：
Young, Bridget
影响因子：
3.6
作者：
Al-Janabi, Hareth;Coles, Jenny;Nicholls, Jean
通讯作者：
Nicholls, Jean
DOI：
10.1073/pnas.1913678117
发表时间：
2020-04-07
影响因子：
11.1
作者：
van der Bles, Anne Marthe;van der Linden, Sander;Spiegelhalter, David J.
通讯作者：
Spiegelhalter, David J.