PDF(Pubmed)
Abstract：
BACKGROUND: Clinical trials that are patient-centered appear to be more successful (e.g., clinical outcomes, improved communication, mutual empowerment, changed attitudes), thus, action research may be a field of importance. The current study explores the Formation and Execution of Activities phases of a community-academic partnership (CAP).
METHODS: Members consisted of industry stakeholders, a healthcare/academic institution, and patients/families with lived experiences as cancer survivors and/or caregivers. Retrospectively, CAP members described the facilitating and/or hindering factors present in the partnership development. A document review process was used. Field notes from three CAP meetings, which focused on understanding clinical trial participation, were analyzed using a thematic approach.
RESULTS: Seven facilitating and three hindering factors were present. Interpersonal (vs. operational) processes were referenced as influential facilitating factors more often. Themes that emerged included \'trials as a treatment option\', \'leaving a legacy\', and \'timing is critical.\'
CONCLUSIONS: This study provides a patient-centered perspective on barriers/challenges of clinical trial participation and how to improve future perceptions.
Clinical trials are more successful when patients are engaged, and their perspectives have been considered in the study design. Community-academic partnerships (CAPs) are one way to ensure patients are more engaged in the research process by creating a collaboration where all parties involved play an equitable role. We provide an example of a CAP with an industry stakeholder, a healthcare/academic institution, and patients as well as families with lived experiences as cancer survivors and/or caregivers. Described here two phases of the CAP: the Formation and the Execution of Activities phases. The Formation phase covers the collaboration process and development of the CAP. In our study, to better understand this phase, CAP members described what did and did not go well during the partnership development. We found more aspects went well than did not and that processes related to the quality of the relationship and communication among CAP members were important. The Execution of Activities phase focuses on how the CAP is working towards an agreed upon outcome. In our study, to better understand this phase, we reviewed notes taken at previous CAP meetings that focused on exploring participation in clinical trials as a treatment option. We found that when it comes to participation in clinical trials, patients and/or caregivers with lived experiences with cancer, felt that timing of this treatment option was important and that reasons for participation included wanting to leave a legacy. In this paper we describe some challenges of clinical trial participation, identified by patients and caregivers, and discuss how to improve views of clinical trial participation in the future.
METHODS: Members consisted of industry stakeholders, a healthcare/academic institution, and patients/families with lived experiences as cancer survivors and/or caregivers. Retrospectively, CAP members described the facilitating and/or hindering factors present in the partnership development. A document review process was used. Field notes from three CAP meetings, which focused on understanding clinical trial participation, were analyzed using a thematic approach.
RESULTS: Seven facilitating and three hindering factors were present. Interpersonal (vs. operational) processes were referenced as influential facilitating factors more often. Themes that emerged included \'trials as a treatment option\', \'leaving a legacy\', and \'timing is critical.\'
CONCLUSIONS: This study provides a patient-centered perspective on barriers/challenges of clinical trial participation and how to improve future perceptions.
Clinical trials are more successful when patients are engaged, and their perspectives have been considered in the study design. Community-academic partnerships (CAPs) are one way to ensure patients are more engaged in the research process by creating a collaboration where all parties involved play an equitable role. We provide an example of a CAP with an industry stakeholder, a healthcare/academic institution, and patients as well as families with lived experiences as cancer survivors and/or caregivers. Described here two phases of the CAP: the Formation and the Execution of Activities phases. The Formation phase covers the collaboration process and development of the CAP. In our study, to better understand this phase, CAP members described what did and did not go well during the partnership development. We found more aspects went well than did not and that processes related to the quality of the relationship and communication among CAP members were important. The Execution of Activities phase focuses on how the CAP is working towards an agreed upon outcome. In our study, to better understand this phase, we reviewed notes taken at previous CAP meetings that focused on exploring participation in clinical trials as a treatment option. We found that when it comes to participation in clinical trials, patients and/or caregivers with lived experiences with cancer, felt that timing of this treatment option was important and that reasons for participation included wanting to leave a legacy. In this paper we describe some challenges of clinical trial participation, identified by patients and caregivers, and discuss how to improve views of clinical trial participation in the future.
摘要：
背景：以患者为中心的临床试验似乎更成功（例如，临床结果，改善沟通,相互授权，态度改变)，因此，行动研究可能是一个重要的领域。本研究探讨了社区学术伙伴关系（CAP）的活动阶段的形成和执行。
方法：成员由行业利益相关者组成，医疗保健/学术机构，以及有癌症幸存者和/或护理人员生活经验的患者/家庭。回顾过去,CAP成员描述了伙伴关系发展中存在的促进和/或阻碍因素。使用了文件审查程序。三次联合呼吁程序会议的实地说明，专注于了解临床试验的参与，使用主题方法进行了分析。
结果：存在七个促进因素和三个阻碍因素。人际关系(vs.操作)过程更经常被称为有影响的促进因素。出现的主题包括“作为治疗选择的试验”，\'留下遗产\',和\'时机至关重要。
结论：这项研究提供了以患者为中心的观点，探讨了参与临床试验的障碍/挑战以及如何改善未来的看法。
当患者参与时，临床试验更成功，他们的观点在研究设计中得到了考虑。社区-学术伙伴关系（CAPs）是通过建立合作，使所有相关方发挥公平作用，从而确保患者更多地参与研究过程的一种方法。我们提供了一个与行业利益相关者合作的例子，医疗保健/学术机构，和患者以及有癌症幸存者和/或护理人员生活经验的家庭。这里描述了CAP的两个阶段：活动的形成和执行阶段。形成阶段涵盖了CAP的协作过程和开发。在我们的研究中,为了更好地理解这个阶段，CAP成员描述了在伙伴关系发展过程中进展顺利和不顺利的情况。我们发现更多的方面进展顺利，并且与CAP成员之间的关系和沟通质量相关的过程很重要。活动执行阶段侧重于CAP如何努力实现商定的结果。在我们的研究中,为了更好地理解这个阶段，我们回顾了以往CAP会议的记录,重点是探讨参与临床试验作为治疗选择.我们发现，当涉及到参与临床试验时，有癌症生活经历的患者和/或护理人员，认为这种治疗选择的时机很重要，参与的原因包括想要留下遗产。在本文中，我们描述了参与临床试验的一些挑战，由患者和护理人员识别，并讨论如何提高未来临床试验参与的观点。
方法：成员由行业利益相关者组成，医疗保健/学术机构，以及有癌症幸存者和/或护理人员生活经验的患者/家庭。回顾过去,CAP成员描述了伙伴关系发展中存在的促进和/或阻碍因素。使用了文件审查程序。三次联合呼吁程序会议的实地说明，专注于了解临床试验的参与，使用主题方法进行了分析。
结果：存在七个促进因素和三个阻碍因素。人际关系(vs.操作)过程更经常被称为有影响的促进因素。出现的主题包括“作为治疗选择的试验”，\'留下遗产\',和\'时机至关重要。
结论：这项研究提供了以患者为中心的观点，探讨了参与临床试验的障碍/挑战以及如何改善未来的看法。
当患者参与时，临床试验更成功，他们的观点在研究设计中得到了考虑。社区-学术伙伴关系（CAPs）是通过建立合作，使所有相关方发挥公平作用，从而确保患者更多地参与研究过程的一种方法。我们提供了一个与行业利益相关者合作的例子，医疗保健/学术机构，和患者以及有癌症幸存者和/或护理人员生活经验的家庭。这里描述了CAP的两个阶段：活动的形成和执行阶段。形成阶段涵盖了CAP的协作过程和开发。在我们的研究中,为了更好地理解这个阶段，CAP成员描述了在伙伴关系发展过程中进展顺利和不顺利的情况。我们发现更多的方面进展顺利，并且与CAP成员之间的关系和沟通质量相关的过程很重要。活动执行阶段侧重于CAP如何努力实现商定的结果。在我们的研究中,为了更好地理解这个阶段，我们回顾了以往CAP会议的记录,重点是探讨参与临床试验作为治疗选择.我们发现，当涉及到参与临床试验时，有癌症生活经历的患者和/或护理人员，认为这种治疗选择的时机很重要，参与的原因包括想要留下遗产。在本文中，我们描述了参与临床试验的一些挑战，由患者和护理人员识别，并讨论如何提高未来临床试验参与的观点。
