Table 2 The Motivations of Patients who Engage in Health Research [20, 21]

Self-fulfilment

These individuals are motivated to find purpose; to do something meaningful; and, to establish productive and rewarding connections.

All 5 patient partners shared being motivated to participate in a project that was rewarding and that they could developing connections with other individuals interested in similar things.

Improving Healthcare

These individuals are motivated to make healthcare better; either because of a good/or bad experience themselves or want the healthcare system to perform to the best of its ability.

Two individuals were motivated by the desire to improve the healthcare system and to advocate for other patients, so they did not have to go through what they had experienced.

Compensation

These individuals need to fulfill a financial need (removing barriers to participation); and/or a need to be recognized by others (being paid is an acknowledgement of the patient/family member’s contribution as a partner).

Three individuals were motivated to be seen as an equal player and valued for the perspectives and ideas they brought to the project.

Influence

These individuals need to see (or feel) how they impact decisions; feeling heard; and/or, considered as a “partner.”

Two individuals were motivated to be involved in projects as an equal player and valued for their perspectives.

Learning New Things

These individuals are motivated by the need to be involved in a novel opportunity; curiosity; and self-improvement.

Two individuals were motivated to be involved in projects that provided an opportunity to learn new things.

Conditional

Not like other motivations, these are situation dependent; enhances the choice, to participate or not, by increasing the perceived value to the individual.

Two individuals declared that they chose to participate in the project because the opportunity was flexible

Perks

The symbolic meaning (and prestige) of being a patient advisor and member of the team; Realized when individuals are asked to attend conferences and events on behalf of the organizations and further reinforced when they are supported financially and not out of pocket.

Four individuals indicated they appreciated that there would be opportunities to present the findings from the project at conferences and that their expenses would be covered.