Why is Healthcare Spooked by Patient Engagement?

I've spent the last eight years at the intersection of two worlds—as a patient navigating the healthcare system and a professional dedicated to connecting the dots between patients, professionals and care. Over the years, I've witnessed (and hey, sometimes viscerally felt it myself) a peculiar phenomena: "patient-centred" healthcare organizations approaching actual patient engagement like it was the door to a haunted house. These fears? Well they lurk in boardrooms, amongst health researchers, project managers and during quality improvement meetings. While they may not always say it outright, the nervousness in the room is palpable: patient engagement can feel downright spooky.

Why? Well I have a few theories. But these fears, like an imaginary monster under the bed, lose their power when we turn on the light and look directly at them.

Fear 1: "Engaging Patients Will Slow Everything Down"

There's an unspoken belief that including patients and families in improvement initiatives, advisory boards, or design processes will bog down projects, and maybe even bring them to a screeching halt. Patients sharing stories, asking questions that derail agendas, or needing a lot of clarification/education to become meaningfully engaged will slow down "getting it done."

Yep, engagement takes time. But getting it done and getting it done right are two different things. So is it really faster to roll out a solution that misses the mark, needs expensive revisions, or collects dust because it didn't really solve a meaningful patient problem? Nope.

When organizations genuinely partner with patients from the beginning, you're likely avoiding months of misguided effort (I know, in our metric-driven world it's a hard one to show). But those patients who share their experiences with your discharge process? They likely just saved you from rolling out a protocol that wouldn't work in the real world. That's not slowing progress—that's accelerating toward solutions that actually matter and make a positive difference to patients: the goal, remember?

The irony is that healthcare professionals waste countless hours speculating about what patients want, need, or will tolerate. Why not just ask them? It's faster than the guesswork.

Fear 2: "We'll Get a Laundry List of Stuff We Can't Fix"

This fear keeps leadership teams up at night: What if we open the floodgates and patients overwhelm us with every grievance, every frustration, every systemic failure they've experienced? What if we can't address everything they raise? Won't that make things worse?

Reality check: patients already have that laundry list. They're sharing it in online reviews, with their friends and family, and with your frontline staff. The question isn't whether these problems exist—it's whether you're creating a structured space to hear and prioritize them.

This is where skilled facilitation can help. Good facilitation isn't about letting conversations wander aimlessly—it's about creating focus. When Big Eye facilitates patient engagement sessions, we acknowledge the breadth of concerns while working together to prioritize and uncover those "moments that matter." Patients don't expect you to fix everything overnight. They expect you to listen, be transparent about constraints, and work collaboratively on what's CAN be done.

Heck, I've seen patients in advisory groups actually help each other stay focused. "That's important, but let's remember we're here today to tackle xxxxx issue."

Patients can actually be your partners in maintaining productive conversations, not obstacles to them.

Fear 3: "We'll Have to Give Up Control"

Now we're getting to the heart of it. This fear is real because it's true—meaningful patient engagement does require sharing power (notice I didn't say "empowering" and there is a subtle but important difference).

For healthcare institutions accustomed to being the unquestioned experts, this feels uncomfortable, even threatening.

But let's sit with this discomfort for a moment. Whose healthcare is it, anyway?

Every project, every initiative, every quality improvement effort exists for one fundamental reason: patients. They are the purpose of healthcare, not the "problem."

When we design care delivery models, clinical spaces, or patient communications without meaningful patient input, we're essentially saying, "We know better than you what you need."

Yes, clinicians have clinical expertise. But patients are the experts in their own condition. Why? Well because they live with it every single day. They deal with its impact on their activities of daily living, in navigating the often complex and inhospitable (pun intended) systems and as a recipient of care.

Giving up exclusive control isn't losing something—it's gaining partners who are deeply invested in success because the outcomes directly impact their lives. I've been in rooms where a patient's insight completely reframed how problems were understood. That's not a loss of control; it's an expansion of wisdom.

Yes, you're ceding some decision-making authority. But you're also distributing responsibility for solutions. And you're remembering a crucial truth: patients are the purpose of healthcare, not the problem.

Fear 4: "We'll Look Foolish If We Don't Have It All Figured Out First"

This might be the hardest fear to admit: What if we bring patients to the table and we don't have a polished presentation? What if we can't show them a draft plan or a prototype? What if we have to say, "We don't actually know what the solution looks like yet"?

Healthcare professionals are trained to be experts, to have answers, to project confidence. The idea of sitting across from patients and families while admitting uncertainty feels pretty vulnerable. So what usually happens is people wait, develop something concrete first, then bring patients in for "feedback" on our nearly-finished work. Though well-intended the "give-them-something-to-respond-to" approach really signals: "We've already decided the direction. We just need you to validate it."

That's not co-design. That's not partnership. That's asking patients to rubber-stamp decisions already made. Do you know how many times I've heard patient partners express that they despise the idea of "rubber stamping" something?

A lot.

True engagement means bringing patients in at the beginning, when everything is ambiguous and undefined. It means inviting them to help identify and frame the actual problem before jumping to solutions. And yes, it means being comfortable saying, "We're not sure what this will look like, and that's exactly why we need you here."

I've watched the magic that happens when healthcare teams embrace this vulnerability. When a project team admits they're starting from scratch, patients don't lose confidence—they lean in. They appreciate the honesty. They recognize they're being treated as genuine partners.

The problem healthcare thinks it's solving isn't always the problem patients are experiencing. That moment of "looking foolish" for not having answers actually makes you look wise—wise enough to recognize you needed patient insight from day one.

It's okay to not have all the answers. In fact, admitting that is the first step toward finding the right ones.

Nothing to Fear But Fear Itself

These fears persist because patient engagement requires cultural change, and change, even when positive, can still be uncomfortable. But the alternative—continuing to design healthcare systems, policies, and services without meaningful patient partnership—is far more frightening.

I've lived on both sides. I know the vulnerability of being a patient who feels unheard. I know the professional anxiety of stepping into unknown territory as a project leader engaging patients and caregivers. But I also know the extraordinary outcomes possible when we confront these fears directly.

The "monsters" of patient engagement aren't real. The opportunities are!

Need help building a plan and facilitating a great patient engagement session? Contact us for experienced, insightful and fear-free engagement.