Virtual patient engagement has become more common in recent years. Emerging research suggests virtual engagement can increase accessibility for patients managing long-term health conditions and those living in larger geographic areas, but it can also be challenging to establish relationships and maintain engagement over time. Little is known about virtual engagement lasting more than two years, nor about the specific contributions of patients to virtual engagement projects. Here we describe a project where virtual engagement was sustained over a long period of time (3.5 years), measure patients’ contributions to the work, and describe the facilitators and challenges of the project using the Valuing All Voices (VAV) patient engagement framework. Five researchers recruited four patient partners living with persistent pain to work together virtually on a project to improve care for others with long-term pain. Researchers documented engagement activities and patient partner contributions and categorized them using Carman et al.’s 3 types of engagement. They also collected data via semi-structured group interviews with patient partners about the facilitators and challenges of the project using the VAV framework. In 3.5 years, patient partners contributed 487 h to the project, averaging 3.0 h per month, and participated in 40 meetings. They contributed to 17 products for patients, health care teams, and researchers. Most products (12 of 17) were created using the more in-depth engagement approaches of involvement or partnership and shared leadership. The group identified facilitators of the project across the five VAV domains of relationship-building, trust, understanding & acceptance, education & communication, and self-awareness, as well as some specific challenges such as keeping track of products across virtual platforms and managing the high volume of project information. Long-term virtual patient engagement is feasible and can use more in-depth engagement approaches. Additionally, it can result in substantial contributions from patients in terms of time, effort, and products. These findings can inform future long-term virtual patient engagement efforts and provide insight into how researchers can structure their activities to encourage and maintain deep engagement over time. Virtual patient engagement has become more common in recent years. Virtual engagement can make it easier for people with long-term health conditions and from larger geographic areas to be involved, but it can also be challenging to establish relationships and maintain engagement over time. There are not many examples of virtual engagement projects lasting more than two years, and many projects do not describe patients’ specific contributions to the work. Here we describe a 3.5-year project where we measured patients’ contributions and described the facilitators and challenges of the project using the Valuing All Voices (VAV) patient engagement framework. Five researchers worked with four patient partners living with persistent pain to improve health care for others with long-term pain. We tracked how we worked together and how patient partners contributed to the project. We categorized the products we created together using three types of engagement that range from less to more in-depth. Researchers also interviewed patient partners about the facilitators and challenges of working together virtually. In 3.5 years, patient partners contributed 487 h to the project, averaging 3.0 h per month, and participated in 40 meetings. They contributed to 17 different products. Twelve of the products used more in-depth engagement approaches. The group identified facilitators of the project across the five VAV domains, as well as some specific challenges. We found that long-term virtual patient engagement is feasible, can use in-depth engagement strategies, and can result in important contributions from patients in terms of time, effort, and products.

中文翻译：

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维持联系：长期虚拟患者参与的可行性和影响

近年来，虚拟患者参与变得越来越普遍。新兴研究表明，虚拟参与可以增加管理长期健康状况的患者和居住在较大地理区域的患者的可及性，但随着时间的推移建立关系和保持参与也可能具有挑战性。人们对持续两年以上的虚拟参与以及患者对虚拟参与项目的具体贡献知之甚少。在这里，我们描述了一个长期（3.5 年）持续虚拟参与的项目，衡量患者对工作的贡献，并使用重视所有声音 (VAV) 患者参与框架描述该项目的促进者和挑战。五名研究人员招募了四名患有持续性疼痛的患者伙伴，通过虚拟方式共同开展一个项目，以改善对其他患有长期疼痛的人的护理。研究人员记录了参与活动和患者合作伙伴的贡献，并使用 Carman 等人的 3 种参与类型对其进行了分类。他们还通过与患者合作伙伴进行半结构化小组访谈来收集有关使用 VAV 框架的项目的促进者和挑战的数据。在 3.5 年的时间里，患者伙伴为该项目贡献了 487 小时，平均每月 3.0 小时，并参加了 40 次会议。他们为患者、医疗团队和研究人员贡献了 17 种产品。大多数产品（17 个中的 12 个）都是使用更深入的参与方法（参与或合作以及共享领导力）创建的。该小组确定了该项目在关系建立、信任、理解和接受、教育和沟通以及自我意识这五个 VAV 领域的推动者，以及一些具体的挑战，例如跨虚拟平台跟踪产品和管理产品。项目信息量大。长期的虚拟患者参与是可行的，并且可以使用更深入的参与方法。此外，它还可以导致患者在时间、精力和产品方面做出巨大贡献。这些发现可以为未来的长期虚拟患者参与工作提供信息，并深入了解研究人员如何构建他们的活动以鼓励和保持长期的深度参与。近年来，虚拟患者参与变得越来越普遍。虚拟参与可以使患有长期健康问题和来自更大地理区域的人们更容易参与，但随着时间的推移建立关系和维持参与也可能具有挑战性。持续两年以上的虚拟参与项目的例子并不多，而且许多项目没有描述患者对工作的具体贡献。在这里，我们描述了一个为期 3.5 年的项目，在该项目中，我们使用重视所有声音 (VAV) 患者参与框架来衡量患者的贡献并描述该项目的促进者和挑战。五名研究人员与四名患有持续疼痛的患者合作，以改善其他患有长期疼痛的患者的医疗保健。我们跟踪了我们如何合作以及患者合作伙伴如何为该项目做出贡献。我们使用从浅到深的三种参与类型对我们共同创建的产品进行了分类。研究人员还采访了患者合作伙伴，了解虚拟合作的促进因素和挑战。在 3.5 年的时间里，患者伙伴为该项目贡献了 487 小时，平均每月 3.0 小时，并参加了 40 场会议。他们贡献了 17 种不同的产品。其中 12 个产品使用了更深入的参与方法。该小组确定了五个 VAV 领域的项目推动者，以及一些具体的挑战。我们发现长期虚拟患者参与是可行的，可以使用深度参与策略，并且可以使患者在时间、精力和产品方面做出重要贡献。