Robins is a passionate Patient Advocate and Co-Founder of Bird Comm and has been on all sides of the healthcare system as a caregiver, cancer survivor, and health communications consultant. In an exclusive interview with Swaay.Health she called attention to what is missing from today’s patient experience efforts: real voices, fair compensation, and the courage to do better.

Key Takeaways

Patient engagement slid backwards after 2020—and it’s showing. Healthcare marketers can’t assume progress just because we’re “talking” about engagement. Real inclusion means ensuring patients are at the table, not just in your survey results. Stop hiring “experts” who lack lived experience. Organizations quietly exclude caregivers and patients when they require many in-person hours and professional degrees when seeking patient experience contributors. If you’re not paying patients for their time, you’re not valuing them. Asking for unpaid advice from patients, when you would pay a consultant for the exact same input, signals that their voice is optional. Respect means building compensation into your engagement budget Engagement Slipped and Barely Anyone Noticed

During the COVID-19 pandemic, provider organizations returned to a command-and-control style out of necessity and most remain in that mode today. Instead of looking outwards for input, Robins sees organizations reaching for like-minded “professionals with letters after their names” to shape their patient experience strategies rather than seeking out people who have lived experience.

“The needle in both engagement and experience has moved backwards since 2020,” said Robins. “I see fewer patients at the boardroom table where decisions are being made and behind the podium at healthcare conferences.”

Robins believes part of the problem is that organizations are using (inadvertently) participation requirements that are keeping the right voices out. She cites the example of an organization looking for someone with a graduate degree for a full-time patient experience position. That excludes caregivers, chronically ill patients, and people with real-world wisdom who are unable to work full-time.

If You’re Not Paying Patients, You’re Not Valuing Them

Healthcare marketers wouldn’t dream of asking an agency to work for free. So Robins wonders why it is still common to expect patients to contribute to conferences, strategy sessions, or design workshops without compensation. When patients are invited to share insights or stories that inform marketing, branding, or experience design decisions, it’s not a favor. It’s labor.

Unlike most conference speakers or advisory panelists, patients do not get paid a salary or have an employer covering their time. Without compensation, participation becomes a privilege only afforded to a narrow slice of the population. This excludes the very people engagement efforts claim to center on.

“I was part of a panel and I realized everyone else was a health professional,” recalled Robins. “I was the only person not being supported in some way. As patients, we travel, we have childcare, we take time off our own jobs. You need to have a budget for that. That’s really important.”

Budgeting for patient input just like you would for consultants, vendors, or subject matter experts is about respect as much as it is about fairness. If you don’t offer it, you may inadvertently be sending a message that you do not see much value in patient insight.

Patient Voices Aren’t Nice-to-Haves

It’s easy to talk about engagement. It’s harder to build it into budgets and operating procedures in a way that truly honors lived experience. But if we want campaigns that resonate, experiences that heal, and systems that actually work for people, we need to stop treating patient insight as a favor and start treating it like the expertise it is. The shift starts when we stop asking for participation and start inviting contribution with compensation, flexibility, and respect baked in.

Because calling it patient engagement doesn’t make it real. Including patients does.

Learn more about Bird Comm at https://www.birdcomm.ca/