Thayer Erin K, Pam Molly, Al Achkar Morhaf, Mentch Laura, Brown Georgia, Kazmerski Traci M, Godfrey Emily
Department of Family Medicine, University of Washington, Seattle, WA, United States.
Cystic Fibrosis Reproductive and Sexual Health Collaborative, Seattle, WA, United States.
J Particip Med. 2021 Mar 11;13(1):e24966. doi: 10.2196/24966.
Patient-centered outcomes research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. Similarly, virtual engagement is the only safe alternative for members of the cystic fibrosis (CF) community, who spend their lives following strict infection control guidelines and are already restricted from in-person interactions. In the absence of universal best practices, the CF community has developed its own guidelines to help PCOR teams engage through web-based platforms.
This study aimed to identify the important attributes, facilitators, and barriers to teams when selecting web-based platforms.
We conducted semistructured interviews with CF community members, nonprofit stakeholders, and researchers to obtain information regarding their experience with using web-based platforms, including the effectiveness and efficiency of these platforms and their satisfaction with and confidence while using each platform. Interviews conducted via Zoom were audio recorded and transcribed. We identified key themes through content analysis with an iterative, inductive, and deductive coding process.
In total, 15 participants reported using web-based platforms for meetings, project management, document sharing, scheduling, and communication. When selecting web-based platforms, participants valued their accessibility, ease of use, and integration with other platforms. Participants speculated that successful web-based collaboration involved platforms that emulate in-person interactions, recognized the digital literacy levels of the team members, intentionally aligned platforms with collaboration goals, and achieved team member buy-in to adopt new platforms.
Successful web-based engagement in PCOR requires the use of multiple platforms in order to fully meet the asynchronous or synchronous goals of the project. This study identified the key attributes for the successful practice of PCOR on web-based platforms and the common challenges and solutions associated with their use. Our findings provide the best practices for selecting platforms and the lessons learned through web-based PCOR collaborations.
以患者为中心的结果研究（PCOR）让患者成为研究的合作伙伴，并聚焦于对患者重要的问题和结果。新冠疫情迫使PCOR团队通过网络平台而非面对面的方式开展工作。同样，虚拟参与是囊性纤维化（CF）群体成员唯一安全的选择，他们一生都遵循严格的感染控制指南，并且已经被限制进行面对面互动。在缺乏通用最佳实践的情况下，CF群体制定了自己的指南，以帮助PCOR团队通过网络平台开展工作。
本研究旨在确定团队在选择网络平台时的重要属性、促进因素和障碍。
我们对CF群体成员、非营利利益相关者和研究人员进行了半结构化访谈，以获取他们使用网络平台的经验信息，包括这些平台的有效性和效率，以及他们在使用每个平台时的满意度和信心。通过Zoom进行的访谈进行了录音和转录。我们通过内容分析，采用迭代、归纳和演绎编码过程确定了关键主题。
共有15名参与者报告使用网络平台进行会议、项目管理、文档共享、日程安排和沟通。在选择网络平台时，参与者看重其可访问性、易用性以及与其他平台的集成性。参与者推测，成功的基于网络的协作涉及能够模拟面对面互动的平台、认可团队成员的数字素养水平、使平台与协作目标有意保持一致，以及实现团队成员对采用新平台的认可。
在PCOR中成功进行基于网络的参与需要使用多个平台，以便充分实现项目的异步或同步目标。本研究确定了在网络平台上成功开展PCOR的关键属性，以及与使用这些平台相关的常见挑战和解决方案。我们的研究结果提供了选择平台的最佳实践，以及通过基于网络的PCOR协作获得的经验教训。
