Here are some highlights from our conversation (edited for clarity and brevity):
Patient partners advise and advocate from the patient perspective – they’re not patient liaisons.
“I feel like we need a publicity campaign,” says Sandra Ketler. “I think we’re all struggling for the right title that implies that we are patient advisors and advocates for inclusion of the patient voice.”
Anne O’Riordan agrees, observing that people sometimes assume she resolves concerns directly with patients, families and caregivers. “That’s quite different from what we do as patient advisors.”
As end-users of health systems and services, they bring unique — and essential — insights.
Across the health system, patients, families and caregivers know what’s working well for them and what can be improved. “We are the ultimate truth-tellers of what’s happening right now,” says Flavie Laliberté.
Those insights can help ensure that solutions work as intended and meet their objectives. “There [can be] a mismatch between a technical solution and what works on the ground,” explains Arun Bala. “When you’re designing a system, patients are the ultimate users, so bring in patients and families early on in the design process.”
Patient partners represent a diverse spectrum of lived and living experiences.
“We’re more than our stories,” Ketler says. “We bring our lived and living experiences, our careers, the travel we’ve done…” Any team benefits from diverse skills, experiences and expertise — and that’s no different for teams involving patient partners.
“You don’t have to be a certain age,” Laliberté adds. “I would love to see more young people getting involved.”
There are many ways to get started as a patient partner!
For those looking to get started as patient partners, Bala suggests beginning with communities and projects that speak to your passions. But there are many pathways: “Start volunteering in a small way,” he says, “and get to know the system. You may have some brilliant ideas that you can bring forward.”
O’Riordan also notes that more experienced patient partners can provide advice and mentorship to newer peers. “When I got my start…I took it upon myself to approach a patient partner who had been there for many years. For me, that mentorship meant a great deal, and it gave me more courage to speak up.”
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Ultimately, patient partners work to help improve health care: for themselves, their loved ones and the population as a whole. Not only are these partnerships essential, but they also show how system transformation can start at the individual level.
As Laliberté concludes, “You have a voice — use it.”
To hear the rest of our conversation, tune in to our Digital Health InfoCast podcast, and be sure to subscribe. Thank you again to Anne, Flavie, Arun and Sandy!
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