PDF(Pubmed)
Abstract：
UNASSIGNED: The evidence based on the inclusion of patients and other stakeholders as partners in the clinical research process has grown substantially. However, little has been reported on how stakeholders are engaged in the governance of large-scale clinical research networks and the infrastructure used by research networks to support engagement in network-affiliated activities.
UNASSIGNED: The objective was to document engagement activities and practices emerging from Clinical Research Networks (CRNs) participating in PCORnet, the National Patient-Centered Clinical Research Network, specifically regarding governance and engagement infrastructure.
UNASSIGNED: We conducted an environmental scan of PCORnet CRN engagement structures, assets, and services, focusing on network oversight structures for policy development and strategic decision-making. The scan included assets and services for supporting patient/stakeholder engagement. Data were collected by searching web-based literature and tool repositories, review of CRN Engagement Plans, analysis of previously collected key informant interviews, and CRN-based iterative review of structured worksheets.
UNASSIGNED: We identified 87 discrete engagement structures, assets, and services across nine CRNs. All CRNs engage patients/stakeholders in their governance, maintain workgroups and/or staff dedicated to overseeing engagement strategies, and offer one or more services to non-CRN researchers to enhance conducting engaged clinical research.
UNASSIGNED: This work provides an important resource for the research community to explore engagement across peers, reflect on progress, consider opportunities to leverage existing infrastructure, and identify new collaborators. It also serves to highlight PCORnet as a resource for non-CRN researchers seeking to efficiently conduct engaged clinical research and a venue for advancing the science of engagement.
UNASSIGNED: The objective was to document engagement activities and practices emerging from Clinical Research Networks (CRNs) participating in PCORnet, the National Patient-Centered Clinical Research Network, specifically regarding governance and engagement infrastructure.
UNASSIGNED: We conducted an environmental scan of PCORnet CRN engagement structures, assets, and services, focusing on network oversight structures for policy development and strategic decision-making. The scan included assets and services for supporting patient/stakeholder engagement. Data were collected by searching web-based literature and tool repositories, review of CRN Engagement Plans, analysis of previously collected key informant interviews, and CRN-based iterative review of structured worksheets.
UNASSIGNED: We identified 87 discrete engagement structures, assets, and services across nine CRNs. All CRNs engage patients/stakeholders in their governance, maintain workgroups and/or staff dedicated to overseeing engagement strategies, and offer one or more services to non-CRN researchers to enhance conducting engaged clinical research.
UNASSIGNED: This work provides an important resource for the research community to explore engagement across peers, reflect on progress, consider opportunities to leverage existing infrastructure, and identify new collaborators. It also serves to highlight PCORnet as a resource for non-CRN researchers seeking to efficiently conduct engaged clinical research and a venue for advancing the science of engagement.
摘要：
UASSIGNED：基于将患者和其他利益相关者作为合作伙伴纳入临床研究过程的证据已大大增加。然而,关于利益相关者如何参与大型临床研究网络的治理以及研究网络用于支持参与网络相关活动的基础设施的报道很少。
UNASSIGNED：目的是记录参与PCORnet的临床研究网络（CRN）的参与活动和实践，全国以患者为中心的临床研究网络，特别是关于治理和参与基础设施。
未经评估：我们对PCORnetCRN参与结构进行了环境扫描，资产，和服务,侧重于政策制定和战略决策的网络监督结构。扫描包括用于支持患者/利益相关者参与的资产和服务。数据是通过搜索基于网络的文献和工具存储库收集的，审查CRN参与计划，对以前收集的关键线人访谈的分析，和基于CRN的结构化工作表的迭代审查。
未经授权：我们确定了87个离散的参与结构，资产，和9个CRN的服务。所有CRN都让患者/利益相关者参与其治理，维护致力于监督参与战略的工作组和/或员工，并向非CRN研究人员提供一项或多项服务，以加强开展参与的临床研究。
UNASSIGNED：这项工作为研究界探索跨同行的参与提供了重要的资源，反思进步，考虑利用现有基础设施的机会，并确定新的合作者。它还有助于强调PCRnet作为非CRN研究人员的资源，寻求有效地进行参与的临床研究和推进参与科学的场所。
UNASSIGNED：目的是记录参与PCORnet的临床研究网络（CRN）的参与活动和实践，全国以患者为中心的临床研究网络，特别是关于治理和参与基础设施。
未经评估：我们对PCORnetCRN参与结构进行了环境扫描，资产，和服务,侧重于政策制定和战略决策的网络监督结构。扫描包括用于支持患者/利益相关者参与的资产和服务。数据是通过搜索基于网络的文献和工具存储库收集的，审查CRN参与计划，对以前收集的关键线人访谈的分析，和基于CRN的结构化工作表的迭代审查。
未经授权：我们确定了87个离散的参与结构，资产，和9个CRN的服务。所有CRN都让患者/利益相关者参与其治理，维护致力于监督参与战略的工作组和/或员工，并向非CRN研究人员提供一项或多项服务，以加强开展参与的临床研究。
UNASSIGNED：这项工作为研究界探索跨同行的参与提供了重要的资源，反思进步，考虑利用现有基础设施的机会，并确定新的合作者。它还有助于强调PCRnet作为非CRN研究人员的资源，寻求有效地进行参与的临床研究和推进参与科学的场所。
