Table 5.

Roles for patients within a patient‐driven LHS

Role	Description
Patient data champion	The champion would help promote the work of the LHS to make patients and staff aware of how patients were involved and how the system was impacting patient care. Their front‐line work would also involve gathering feedback from patients not directly involved, which would be passed to the facilitator to inform their conversations with other system stakeholders.
Patient data facilitator	The facilitator would serve a knowledge broker function, helping create materials that communicated the system (which would be distributed and used by Data Champions), helping translate patient feedback into suggestions for the system input and outputs and acting as a bridge between patient networks and communities and the other system stakeholders, such as managers, clinicians and commissioners, for example, supporting new patient contributors to become involved in particular projects.
Patient data guardian	The guardian would have an oversight and monitoring role, to provide a check on how data were collected and used. It was noted that this role needed to have power attributed to it to be effective, for example, playing a role in granting or withholding permission to access data in the system based on assessment of how well a project met patient needs and whether it had sufficient plans for communication of findings back to patient groups.

Abbreviation: LHS, Learning Health System.