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

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