Are You Silencing Patient Voices While Calling It Patient Engagement?

There's a seductive appeal to rules, standards, coded language, and hierarchy in healthcare. There's also an intense love for protocols, best practices, and evidence-based guidelines. And hey, I'm not here to say they aren't important—often, they save lives. They create consistency and help untangle the serious complexities of a tangled web of touchpoints, people, and services.

But after decades of stuffing patient needs and preferences into the back corner, healthcare decided to engage and put patients at the "centre" of everything.

But did it really? Or is it just asking patients to the table to convince them that assimilation to healthcare's historically paternal (if not patriarchal) way of doing things is the only answer?

One of the most common complaints I hear from patient partners is that they're there for the 'rubber stamp.'

The Borg Problem

Though I'm more of an old-school Trekkie, I did catch Star Trek: The Next Generation a few times in university. In it, the Borg are an alien species collective where everyone thinks with one central brain. Their mantra? "We are Borg. You will be assimilated. Your biological and technological distinctiveness will be added to our own. Your culture will adapt to serve us. Resistance is futile."

That's what I've felt when I've been part of certain (and not all) engagements where I've witnessed well-meaning health leaders do exactly this with patient and caregiver partners.

Instead of teaching their staff to use plain language and full descriptors, they teach patients and caregivers to learn all the acronyms and "elevate" their vocabulary. Instead of educating their staff about how to thoughtfully present to patients and caregivers and ask better, more targeted questions, they provide "learning opportunities" to partners so they can be better advocates and contributors.

Participants are trained with such rigid scripts and frameworks that these partners emerge sounding less like themselves and more like institutional spokespeople. They've learned the approved language, which stories are "on message," and what feedback will actually be heard.

In other words, they've been assimilated. Because honestly, resistance is kind of futile.

Sometime it really feels like resistance is futile as a patient partner. Source: CBS

When Resistance Becomes Listlessness

In my own experience as a patient partner, I felt this pressure acutely. I came with raw, lived experience—the frustration of fragmented care, navigating countless doctors over a seven-year journey to the diagnosis of a serious but totally treatable condition. Small indignities compound into major barriers.

That didn't mean I showed up ready for a fight—quite the opposite. As someone who had worked in healthcare—and in our own organization's patient and family engagement—I knew best practices. I understood how important it was to prepare staff and find that vital balance between the lived experience at the table and the often non-linear journey to building trust and gathering meaningful input.

But the group's "learning" goals, which aimed to smooth away rough edges, started to feel like sandpaper.

I began asking questions about the "learning" staff were getting to interact with patient partners and was met with awkward silence and an uneasy smile.

In one feedback loop to the group, someone noted, "Pam is very passionate about this."

If you're a woman, then you already know this is code for "too much."

And that's when I realized it: I would NOT assimilate.

I didn't quit immediately (though I did eventually), but I started to self-censor, sit back on mute, and stop contributing in a meaningful way—even though I had ample experience, insights, and knowledge. What was the point when the hidden goal was to turn patients into better partners instead of actually doing the much harder work of reorienting the system to serve patients better? To simplify intricacies and tangled webs, to communicate their knowledge into everyday language that almost anyone could understand.

I mean, does a "system navigator" really change the system or just enable a series of disparate, siloed parts to sputter on indefinitely?

Mission Unaccomplished?

Patient and caregiver engagement's purpose is to bring perspectives to the table that don't already exist in the room. When we train those partners to think and communicate like existing stakeholders, we've defeated their entire reason for being there.

You don't need another voice saying what clinicians and administrators already believe. You DO need the voice that makes everyone uncomfortable because it exposes blind spots.

That story that doesn't fit neatly into your improvement framework? That feedback challenges your basic assumptions and isn't a roadblock; it's a door leading to a better path.

Diversity of thought isn't about having different types of people in the room so you can get them all to assimilate and look at the challenge through the lens you've instilled in them. It's about preserving different types of thinking so that you're able to uncover a picture you wouldn't be able to view otherwise.

The Uncomfortable Truth

If you really want to co-design with patients and caregivers, you need to be prepared for their insights to disrupt the status quo. If your patient partners are making everyone comfortable, if they're reinforcing existing plans rather than challenging them, if they've learned to speak your language instead of forcing you to understand theirs, you haven't engaged patients. You've just expanded your staff without adding them to payroll (and that's another blog post because you should always be compensating partners!).

Preserving the true voices of patients and caregivers is a messy business. It's uncomfortable and usually not entirely a linear journey. Sometimes it means sitting with anger that has nowhere to go. It means hearing about problems you don't know how to fix. It means accepting that some patient experiences are definitely going to conflict with your operational realities, and there's no easy resolution.

But this "messiness" is, in many ways, the entire point. Healthcare is really good at running smoothly for everyone except patients. The patient perspective is a challenging one because, as patients, we experience the failures and successes of the system on a deeply personal level.

When a patient partner tells you something that doesn't fit your framework, that's not a problem—it's the insight you've engaged them for.

What Does the Borg Assimilation Look Like?

• Uniform training that teaches patients the "right way" to give feedback, prioritizing organizational comfort over authentic truth-telling.

• Professional patient partners who become so invested in the system they start thinking like insiders and are prepared to protect the status quo. They might be heard saying, "Well, our job is not to question that."

• Too much head nodding and rubber stamping and not enough inquiry and discussion.

• "Lazy" presenting from staff. For me, this means academic presentations that have NOT been modified/simplified into plain language and NOT asking pointed patient/caregiver-specific questions to glean important information.

• Approved narratives where certain stories are welcomed (inspirational, grateful) while others are quietly discouraged (angry, systemic, unresolved).

• Jargon adoption as a badge of belonging—patients who speak fluently in healthcare acronyms have learned the culture, but have they lost their essential perspective?

  
  

A Different Approach

What if instead of training patient partners to fit our systems, we trained ourselves to receive what they're offering?

What if the onus was on the facilitators, the service providers, and the system designers to ask better questions? To get comfortable with discomfort? To recognize that discomfort means we're actually on the right path?

Real patient engagement needs:

• Context, not conditioning. Help partners understand how the system works, but don't tell them how to think about it.

• Permission to get "real." Encourage partners to bring their authentic voice, even when it stings. Model receptiveness to difficult feedback.

• Diversity of thought and experience. I know recruitment of a broad range of patients and caregivers can sometimes be a real struggle, but do your best to enlist people from different ethnicities, abilities, identities, and experiences so you don't end up with a myopic view of a challenge and instead create as full a picture as possible.

• Different pathways to contribution. Some people thrive in committees. Others contribute best through written feedback or design sessions. Don't force everyone through the same model. Figure out what works best for the person and engage accordingly.

• People to be paid for their time, for their parking and/or transportation, and, if needed, for respite to be involved in any activity for them to be a part of. You would pay an "expert" to come in and do an assessment of your IT system, so why would it be any different for a lived experience expert? Old thinking purported that patients and caregivers who were compensated would feel pressured to please. New thinking is that payment signals the VALUE of their contribution. Besides, because you're going to set up your engagement in a non-Borg way, you'll encourage trust, honesty, and transparency from the get-go.

• A willingness to change. Measure success not by how smoothly meetings run, but by whether patient input actually changed decisions, redirected resources, or prevented harm.

  
  

Healthcare doesn't need more people who think alike. It needs the productive discomfort that comes from genuinely different perspectives colliding—and the humility to be changed by what patients have been trying to tell us all along.

Ready to Do Patient Engagement Differently?

My experience in healthcare facilitation AND as a patient partner gives me a unique perspective that helps to design meaningful partnerships that value diversity of experience, thought, and perspective—where the hard work falls on me and you to create safe spaces where patient and caregivers' authentic voices can be heard and acted upon.

Because getting comfortable with discomfort isn't a problem to solve. It's a sign you're finally listening!

Let's discuss how Big Eye Innovation can elevate the experience and impact of patient and caregiver engagement for your team.

The Importance of Authentic Engagement

Engaging with patients and caregivers authentically is crucial. It’s not just about ticking boxes or meeting quotas. It’s about understanding their experiences and perspectives. When we truly listen, we can uncover insights that lead to meaningful change.

Building Trust

Trust is the foundation of any successful relationship. In healthcare, this means creating an environment where patients feel safe to share their stories. It’s about being transparent and honest, even when the truth is uncomfortable.

The Role of Feedback

Feedback is a gift. It’s an opportunity to learn and grow. When patients provide feedback, it’s essential to take it seriously. This means not just listening, but also acting on their suggestions. It’s about showing that their voices matter.

Creating a Culture of Innovation

Innovation thrives in environments where diverse voices are heard. By fostering a culture that values input from patients and caregivers, we can drive positive change. This isn’t just about improving processes; it’s about transforming the entire healthcare experience.

Conclusion

In conclusion, let’s shift our focus from assimilation to authentic engagement. Let’s embrace the messiness of patient experiences and use it to fuel our innovation. By doing so, we can create a healthcare system that truly serves everyone.

So, are you ready to join me in this journey? Together, we can make a difference.