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Background: 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. Methods: 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. Results: 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. Conclusions: 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. Plain English summary: Background: 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. Methods: 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. Results: 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. Conclusions: 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. [ABSTRACT FROM AUTHOR] |
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