In this topic page, we present participants’ perspectives about how patients’ contributions to research can be valued. At the moment, there are no national or common guidelines in Canada for compensating patient, caregiver or public involvement in research, including honoraria or expenses (such as travel, child care, accommodation etc.), although some specific examples of guidance and best practices are listed in our Resources sections. Besides monetary compensation and reimbursement for out of pocket expenses, participants emphasized the importance of feeling that their contributions are acknowledged. In addition, participants appreciated other kinds of benefits of engagement such as receiving training or presenting at a conference. Overall, participants emphasized that valuing contributions is not a ‘one size fits all’ kind of situation; it is necessary to consider the individual context and perspectives of the patient partners and organizational or funding requirements.
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Compensation for participants’ contribution of time and resources
Acknowledgement of patients’ and caregivers’ contributions
Benefits from participation
Patients and researchers alike used words such as compensation, per diem, honorarium, remuneration andstipends to describe the monetary compensation they received in recognition of their time and contributions. Participants offered different reasons for why compensation was important, for example, to reduce the feeling of an unbalanced relationship, to address questions of equity, and to improve participation.
Payments and arrangements to cover expenses such as transport or babysitting costs were also valued by patient partners to ensure the inclusion of people who are financially unable to contribute unpaid hours of their time without this type of support.
Likewise, some participants felt that not being paid and/or not feeling valued contributed to a view that participation was just tokenism (i.e., “just to tick off a box”) or feeling that they are only being invited to participate to meet the accreditation requirements.
Researchers described different kinds of approaches to determine the right amount and form of payment.
Several researchers and patients indicated the need to consider carefully the individual context of participants, as they do not always benefit from or expect compensation for their time. For example, one researcher shared that some patients felt payment would influence their participation inappropriately, perhaps feeling uncomfortable with speaking up to contradict the teams’ opinions when being paid, and people on disability may experience negative consequences with their benefit program if they accept payments. Others felt that the choice should be left with the patient to decide whether or not they want to accept the money.
Many participants described how establishing an equal and inclusive collaboration was as, if not more, important than monetary compensations. One participant described a true partnership as when you are treated as equals in a relationship. To read more about how patients and researchers developed relationships, you can visit the section on Relationship Building. Researchers described efforts to be inclusive, for example, inviting patients to join conferences, including patients as co-authors on academic papers or as co-investigators on a funding request.
Patients also described receiving non-monetary benefits from participation such as training, learning from participation and the ability to ask questions directly to healthcare professionals. But patients also expressed the importance to them in helping others or helping to improve the health care system through their participation.