Compensating patients and caregivers for their expertise

Christa Haanstra, Executive Lead Strategic Communications

In 2015, when we researched and wrote Should Money Come into It?, a tool for helping to decide whether to pay patient- and caregiver-engagement participants, we knew it was a hot topic. In fact, it received a lot of attention at launch and remains one of our most popular resources.

Two years later, as the patient and family caregiver engagement movement continues to build momentum, we’re seeing renewed interest in this report. It’s clear that whether to pay patient and caregiver participants, as a form of recognition, is something that many in the health and social sectors are grappling with. This can only be defined as notable progress, and we’re thrilled that our paper is serving as a useful roadmap for them on this issue.

This report isn’t only striking a chord in Canada—it’s resonating beyond our borders as well. First came a request from a patient experience online library in the UK to promote it on their homepage and make it available on their website. Then came a shout-out to the report in a recent #BMJDebate tweetchat, followed by a BMJ blog post  in advance of the next tweetchat (#BMJDebate) that is happening at noon EST on July 13, 2017 on the Terms of engagement for patient participation.

Given the report’s currency—pun intended—we wanted to highlight again some of the key points and underlying reasons we created it in the first place.

It’s important to remember that recognition and appreciation for people’s time and expertise comes in many forms, and compensation is only one of them. But the truth is, for some, participation isn’t an option without compensation.

Ever since patients and caregivers have been taking seats at the tables where planning, discussions and reviews are being done at hospitals and other health care organizations, the inequity has been clear. At the Change Foundation, we strongly believe that covering expenses for them to participate, and share their expertise—often based on very personal, sometimes emotional stories and experiences—is a given. In fact, we would argue those expenses should extend beyond the typical—mileage, parking, meals—to include things like child care, respite care, personal support to get to meetings, even dog sitting. Basically, we believe when we are asking people to share their expertise as a volunteer, the least we can do is make sure they aren’t out of pocket for any expenses they have to cover to be able to participate.

But at the Change Foundation, we also believe that covering only expenses is sometimes not enough. A key principle of co-design is that patients and caregivers are equal partners in the process—yet there’s a big elephant in the room. We are asking patients and caregivers to commit the same amount of time and energy—sometimes more—as paid employees. We believe that, in certain situations, patients, families and caregivers should also be offered compensation for their time and expertise.

The truth is not all patients and caregivers want to be paid, but that shouldn’t stop organizations from offering payment. In fact, we’ve had experiences where payment was returned, or payments were donated back to the organization. It’s much better to have this happen and give the patient or caregiver the option, than to not offer payment at all.

As patient and caregiver engagement, and co-design opportunities, become much more commonplace, we think the discussion about compensation needs to get more attention. Each organization needs to grapple with it independently. We are happy that our framework—which we know isn’t perfect, but we believe is a solid starting point—is serving as a spark to have the discussion.


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