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Table 1 Some Key Take-Aways from the CONNECT Experience with Patient Engagement

From: “We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

Communications Maintain frequent contact with patient partners
Enquire on mode of communication preference
Keep emails brief
Avoid multiple subjects or discussion topics in the same email
Roles and Responsibilities Provide patient partners with meaningful opportunities to engage
Consider providing patient partners with key leadership roles
Identify clear roles and responsibilities for all team members
Project Planning Draft the project’s core value statements as well as a contingency plan to deal will unexpected changes in project leadership
Manage team expectations by assessing time and resources needed to produce key deliverables
Provide adequate support to allow for full participation in project-related activities and events
Provide reimbursement to patient partners for out-of-pocket expenses incurred from their involvement