PDF(Pubmed)
Abstract：
BACKGROUND: Limited evidence exists about which patient and stakeholder engagement practices support or hinder study teams as they negotiate different viewpoints in decisions about the design and conduct of patient-centered outcomes research.
METHODS: We applied a multiple-embedded descriptive case study design for six studies funded by the Patient-Centered Outcomes Research Institute (PCORI). We interviewed 32 researchers and stakeholder partners, including patients, caregivers and clinicians, and reviewed documents related to each study (e.g., publications, and progress reports submitted to PCORI).
RESULTS: Overall, researchers reported that incorporating different viewpoints was a strength or opportunity to learn rather than something to be avoided or dreaded. Across cases, different viewpoints and priorities, often related to ethical or pragmatic considerations, emerged between researchers and stakeholders, between stakeholder groups (e.g., patients and clinicians) or within groups (e.g., amongst researchers). Examples of navigating different viewpoints arose across study phases. The length of time to resolve issues depended on how strongly people disagreed and the perceived importance or impact of decisions on the study. All cases used collaborative decision-making approaches, often described as consensus, throughout the study. Interviewees described consensus as using negotiation, compromise or working towards an agreeable decision. To encourage consensus, cases actively facilitated group discussions with an openness to diverse opinions, remained flexible and open to trying new things, referenced a ground rule or common goal and delegated decisions to partners or smaller workgroups. When viewpoints were not easily resolved, cases used different approaches to reach final decisions while maintaining relationships with partners, such as elevating decisions to leadership or agreeing to test out an approach. No one engagement structure (e.g., advisory group, coinvestigator) stood out as better able to manage different viewpoints. Teams adjusted engagement structures and behaviours to facilitate an overall culture of inclusion and respect. Partners acknowledged the intentional efforts of researchers to incorporate their perspectives, navigate challenges and communicate the value of partner input.
CONCLUSIONS: By using collaborative decision-making in the early stages and throughout the study, researchers built trust with partners so that when decisions were difficult to resolve, partners still felt listened to and that their input mattered.
UNASSIGNED: Members of the PCORI Patient Engagement Advisory Panel in 2019-2020 provided input into the design of the study, including the research questions and approaches to data collection and analysis.
METHODS: We applied a multiple-embedded descriptive case study design for six studies funded by the Patient-Centered Outcomes Research Institute (PCORI). We interviewed 32 researchers and stakeholder partners, including patients, caregivers and clinicians, and reviewed documents related to each study (e.g., publications, and progress reports submitted to PCORI).
RESULTS: Overall, researchers reported that incorporating different viewpoints was a strength or opportunity to learn rather than something to be avoided or dreaded. Across cases, different viewpoints and priorities, often related to ethical or pragmatic considerations, emerged between researchers and stakeholders, between stakeholder groups (e.g., patients and clinicians) or within groups (e.g., amongst researchers). Examples of navigating different viewpoints arose across study phases. The length of time to resolve issues depended on how strongly people disagreed and the perceived importance or impact of decisions on the study. All cases used collaborative decision-making approaches, often described as consensus, throughout the study. Interviewees described consensus as using negotiation, compromise or working towards an agreeable decision. To encourage consensus, cases actively facilitated group discussions with an openness to diverse opinions, remained flexible and open to trying new things, referenced a ground rule or common goal and delegated decisions to partners or smaller workgroups. When viewpoints were not easily resolved, cases used different approaches to reach final decisions while maintaining relationships with partners, such as elevating decisions to leadership or agreeing to test out an approach. No one engagement structure (e.g., advisory group, coinvestigator) stood out as better able to manage different viewpoints. Teams adjusted engagement structures and behaviours to facilitate an overall culture of inclusion and respect. Partners acknowledged the intentional efforts of researchers to incorporate their perspectives, navigate challenges and communicate the value of partner input.
CONCLUSIONS: By using collaborative decision-making in the early stages and throughout the study, researchers built trust with partners so that when decisions were difficult to resolve, partners still felt listened to and that their input mattered.
UNASSIGNED: Members of the PCORI Patient Engagement Advisory Panel in 2019-2020 provided input into the design of the study, including the research questions and approaches to data collection and analysis.
摘要：
背景：关于哪些患者和利益相关者参与实践支持或阻碍研究团队，因为他们在关于以患者为中心的结局研究的设计和实施的决策中协商不同的观点，存在有限的证据。
方法：我们对由以患者为中心的结果研究所（PCORI）资助的六项研究进行了多嵌入描述性案例研究设计。我们采访了32位研究人员和利益相关者合作伙伴，包括患者,护理人员和临床医生，并审查了与每项研究相关的文件(例如，出版物,和提交给PCORI的进度报告)。
结果：总体而言，研究人员报告说，结合不同的观点是学习的力量或机会，而不是要避免或害怕的东西。跨案件，不同的观点和优先事项，通常与道德或务实的考虑有关，出现在研究人员和利益相关者之间，利益相关者群体之间(例如，患者和临床医生)或组内(例如，在研究人员中)。在研究阶段中出现了导航不同观点的示例。解决问题的时间长短取决于人们的意见分歧程度以及决策对研究的重要性或影响。所有案例都使用了协作决策方法，通常被描述为共识，整个研究。受访者将共识描述为使用谈判，妥协或努力做出同意的决定。为了鼓励共识，案件积极促进小组讨论，对不同意见持开放态度，保持灵活和开放的尝试新事物，引用了基本规则或共同目标，并将决策委托给合作伙伴或较小的工作组。当观点不容易解决时，案例使用不同的方法来达成最终决定，同时保持与合作伙伴的关系，例如将决策提升为领导或同意测试一种方法。没有一个接合结构(例如，咨询小组,联合调查员)脱颖而出，能够更好地管理不同的观点。团队调整了参与结构和行为，以促进包容和尊重的整体文化。合作伙伴承认研究人员有意努力纳入他们的观点，导航挑战并传达合作伙伴输入的价值。
结论：通过在早期阶段和整个研究中使用协作决策，研究人员与合作伙伴建立了信任，因此当决策难以解决时，合作伙伴仍然感到倾听，他们的投入很重要。
■2019-2020年PCORI患者参与咨询小组的成员为研究的设计提供了意见，包括研究问题和数据收集和分析方法。
方法：我们对由以患者为中心的结果研究所（PCORI）资助的六项研究进行了多嵌入描述性案例研究设计。我们采访了32位研究人员和利益相关者合作伙伴，包括患者,护理人员和临床医生，并审查了与每项研究相关的文件(例如，出版物,和提交给PCORI的进度报告)。
结果：总体而言，研究人员报告说，结合不同的观点是学习的力量或机会，而不是要避免或害怕的东西。跨案件，不同的观点和优先事项，通常与道德或务实的考虑有关，出现在研究人员和利益相关者之间，利益相关者群体之间(例如，患者和临床医生)或组内(例如，在研究人员中)。在研究阶段中出现了导航不同观点的示例。解决问题的时间长短取决于人们的意见分歧程度以及决策对研究的重要性或影响。所有案例都使用了协作决策方法，通常被描述为共识，整个研究。受访者将共识描述为使用谈判，妥协或努力做出同意的决定。为了鼓励共识，案件积极促进小组讨论，对不同意见持开放态度，保持灵活和开放的尝试新事物，引用了基本规则或共同目标，并将决策委托给合作伙伴或较小的工作组。当观点不容易解决时，案例使用不同的方法来达成最终决定，同时保持与合作伙伴的关系，例如将决策提升为领导或同意测试一种方法。没有一个接合结构(例如，咨询小组,联合调查员)脱颖而出，能够更好地管理不同的观点。团队调整了参与结构和行为，以促进包容和尊重的整体文化。合作伙伴承认研究人员有意努力纳入他们的观点，导航挑战并传达合作伙伴输入的价值。
结论：通过在早期阶段和整个研究中使用协作决策，研究人员与合作伙伴建立了信任，因此当决策难以解决时，合作伙伴仍然感到倾听，他们的投入很重要。
■2019-2020年PCORI患者参与咨询小组的成员为研究的设计提供了意见，包括研究问题和数据收集和分析方法。
