Table 4 Facilitators and challenges to sustaining virtual patient engagement over time, by Valuing All Voices domain

Education & communication

•The group reviewed goals and consistently worked toward them

•The group welcomed everyone's communication style and regularly practiced listening and asking clarifying questions

•Researchers held a check-in with patient partners after the first few meetings, which set the tone for providing feedback

•Researchers established bi-directional communication with patient partners by regularly asking for feedback and encouraging them to reach out with ideas, questions, and concerns

•Patient partners sometimes felt overwhelmed with the amount of project information they received

•Patient partners found it challenging to locate drafts and final versions of products across electronic platforms (email and Slack)

•Patient partners found it hard to track progress toward project goals

•Researchers could not find a way to store all project materials in an easily accessible place

Understanding & acceptance

•The group fostered a sense of unity, practice of empathy, and a “come as you are” culture

•Group members shared their unique traits and experiences, such as skills in creative writing, photography, plain-language editing, and marketing, and lived experiences with pain, which created connectedness

•Patient partners could contribute to the group in a variety of ways, such as sharing feedback on co-created products via written or verbal feedback or providing specific or high-level edits

•Patient partners created accountability for doing meeting pre-work—not completing pre-work impacted the meeting

•Researchers weren’t always clear about what pre-work they expected from patient partners before meetings

Trust

•Researchers engaged patients early in the project

•Researchers frequently referred to patient partners as the experts

•The group acknowledged each person's experiences

•Patient partners demonstrated vulnerability when sharing stories that were difficult, sad, or painful

•Researchers were clear about the agenda, encouraged balanced participation, respected confidentiality, took notes to track discussion and feedback, shared how input would be used, and provided updates about the impact of the group’s work

N/A

Self-awareness

•The group made space for storytelling and sharing

•Patient partners asked thought-provoking questions and reflected on bias

•The group gained perspectives from empathizing with others

•The group regularly questioned our bias and privilege and intentionally tried to see who was not “in the room”

•Group members felt personal change

•The group is not demographically diverse; there was potential for tokenizing people's experience

Relationship-building

•The group greeted each other at the start of the meetings

•The group did not judge appearances

•The group respected each other's perspective and experience

•The group offered recognition and gratitude for the talents each person contributed

•Patient partners shared homemade gifts with the group, including poetry, handmade jewelry, and stationary with nature photos

•The group tested having 15 min of pre-meeting social time to give patient partners time to connect without the researchers, but patient partners found the time to be too unstructured and didn’t feel it was needed