Valuing contributions – Julie


In Julie’s experience, determining compensation and benefits for participants should include consideration of power differentials, diversity and personal preferences.


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. I would argue again if we’re going to be examining this power differential, if we’re going to be really looking at the – valuing the knowledge and the wisdom that patients bring to the conversation and we know through evidence that there is knowledge and evidence that they’re bringing and it is shaping policy, programs, research, then we need to compensate for that and I don’t think we’ve come very far as an entire community about really valuing that from a compensation point of view and that’s challenging, right? 

We’re in a state right now of fiscal restraint and resources are limited but if we’re truly going to be doing this work together and making sure that we have again diversity and equity – you’re going to be getting the same people who have the time, the availability and the resources to engage unless you’re actually starting to compensate for communities who might not have the time, the resources and the financial ability to participate. So it levels the playing field and it ensures that we’re getting diverse perspectives and that’s important especially in research. 

And patients and families need to be included in what does that compensation look like and compensation can be applied as sort of a blank approach. It really has to be up to – it can be individualized. Some patients and families want to volunteer. They want to simply – they’re thankful to be at the table and this is their contribution. Others can’t effectively contribute unless they’re compensated. They’re taking time away from work. They’re taking time away from caregiving. And still others, we need to think about as I said earlier, about how do we compensate in a way that supports them. It might be offering respite. It might be offering transportation. It might be, you know, offering some sort of per diem. I think there’s different models and different ways and that we have to individualize it to the needs of that patient partner.

Some patient partners are on disability and they can’t accept financial compensation, right? So there’s – but they could accept transportation and respite and … Yeah. There’s creative ways to do this. 

Or some people feel that if they get compensated that they’ve then drunk the Kool-Aid and that they have to align themselves with, you know, either the findings of the researcher or the priorities that they’re setting and that they can’t be as objective or as much of a positive disruptor as they could be if they weren’t being compensated. I take issue with that because I’m on a payroll and I am definitely not someone who aligns myself necessarily with the views of the organization. I’m there as a positive disruptor and as an advisor. 

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