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.
Feel free to jump to the following sections:
Compensation for participants’ contribution of time and resources
Acknowledgement of patients’ and caregivers’ contributions
Benefits from participation
Valuing contributions
In terms of barriers, I would suggest – I think this is probably mutually agreed upon by everyone that we need to make sure that we’re compensating our patient partners appropriately and so to date that’s been really about expenses.
Compensation for participants’ contribution of time and resources
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.
Valuing contributions
And also really importantly having some sort of reimbursement honorarium, something that shows that you're valuing their input.
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.
Valuing contributions
Well, not only were they super-accommodating with the schedule but they also kept us fed and gave us a bit of a per diem — not a per diem, sorry; they gave a bit of like an honorarium.
Valuing contributions
But then when you get to the co-design event - and I mean constant member checking, constant going back “did we get this right?” is part of it, so that they feel included throughout. It takes a lot of logistical support even to get youth in the room.
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.
Valuing contributions
Yes, there are different models. If it’s an episodic consultation, normally what we do is we ask…we negotiate it up front. What’s a reasonable amount, considering this amount of activity, and in what form? Money? Gift cards?
Valuing Contributions
So that voice is right in all elements of what we're doing in the network, which is really important. Also on our network steering committee we have two parents, so that really is guiding, steering the running - the functioning of our network.
Valuing contributions
You know, I have no suggestions about that. I’m always very appreciative when I – and surprised when I am compensated, because I do this because I want to. That being said, I think when you have patients on a four-year project, and making significant time contributions – I mean, I think it’s nice when we have a focus group, and coffee and cookies are provided.
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.
Valuing contributions
But if we’re going to move forward – and again, you said that the topic of remuneration comes up – it’s also a question of equity. If everyone else around the table is drawing a salary except for me, I mean, do you value my time and my input, or not?
Acknowledgement of patients’ and caregivers’ contributions
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.
Valuing contributions
Interviewer: And were you able to remunerate the patients that you worked with as partners, was that ever an issue?
We did offer them honorariums for sure and too it was told to me several times that that kind of payment was not necessary, it was told to me by the patients. And we had to insist with some patients that they take this token of our appreciation.
Benefits from participation
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.
Valuing contributions
The benefits for myself is that I value the information I have given of myself to people that do need it. And, you know, there’s – I benefit that way. And, basically it’s just about being a human, giving human input, giving experience… and, well. The benefits. It’s just something I like. I like doing, I like being a part of, if it relates to me, if I could be valuable, yeah.