Patient Engagement Isn’t Enough: Why Provider Engagement Completes the Equation

Patient engagement was never meant to replace providers. It was meant to meet them.

“Patient engagement” has been a buzzword in clinical research for as long as I’ve worked in the field.Chances are, if you’ve ever been to a patient engagement conference, you will have heard a discussion that boils down to: “Why are we still talking about this?”

After living through Rona’s diagnosis and treatment, I’d like to propose a theory: The pendulum, once firmly rooted in “doctor knows best,” has swung toward patient-centered care. But the systems, incentives, and communication norms providers work within haven’t fully made that shift, creating a gap neither side intended.

Before you start formulating your reply to this post, please hear me out.

I love patient engagement. I have made a career out of it. I love it so much that I’ve kept doing it, even when doing so triggered many horrible memories from when I was advocating for my own child, who did not survive.

But patient engagement without provider engagement is only half the equation. 

The good news? I have spent the last 18 months speaking with providers, residents, and med students and I can tell you providers want this, too. In the Q&A sessions, the questions are rarely focused on what happened to my child. Instead, they center on one central theme: How can we do this better? 

We talk – sometimes for an hour or more – about conversations I wish had been handled differently. More importantly, we talk about the “why” behind that feedback. The importance of clearly communicating to families about the implications of different treatment options for quality of life outcomes. The truths most people will not understand from euphemisms we employ when a harsh reality seems to be too much. 

Research consistently shows that families in pediatric settings prefer clear, direct communication when receiving a prognosis. So why is clear communication so hard to come by?

There are many forces driving this disconnect: time constraints on visits, competing priorities (on more than one occasion, I was worried about a timed medication while a team was running a code), goals of care dictated by insurers, and the very real possibility that we are often speaking two different languages. 

Closing that gap shouldn’t rest solely on families, but while we work to change systems, there are practical ways caregivers can improve communication in real time, even in imperfect conditions.

During Rona’s treatment, I identified a few techniques that helped to facilitate communication with even the most challenging personalities we encountered.

Respect providers’ training without silencing yourself.

Respect the providers’ training. This does not mean that you should refrain from sharing opinions or asking questions – the opposite, in fact – but focus on facts over emotion, research studies over social media stats, and respectful dialogue over accusations. This can be really hard to do. While we were living (literally) in the hospital, I had my moments. But those moments never got me anywhere. Showing up respectfully and “with receipts” (as the kids would say) worked every time.

Respect providers’ time and the system they are navigating.

Respect your providers’ time. Healthcare is plagued by high rates of burnout. Most people get into healthcare because they want to help people, and our healthcare system has increasingly made that a challenge. For every few minutes your provider spends with you, they will likely have to spend twice as many minutes documenting for reimbursement. As patient to provider ratios dwindle, that stress only grows. 

There are two uncomfortable truths here. First, you may not be your provider’s top priority. Paradoxically, that often means you’re doing relatively okay. Second, clarity matters. Tightening what you say helps providers help you faster. Before you go to an appointment or are seen for rounds, write down the key things you want to highlight and your questions in order of importance. If a provider asks for a health history, they are asking for the relevant details. They don’t need all of the minutia (unless they ask). By editing yourself to share what is relevant, you will help to maximize the time the providers can pull the right strings to get you answers faster.

Acknowledge your providers’ humanity, especially in moments of loss.

Acknowledge your providers’ humanity. After Rona died, the team had special support available because they, too, felt that loss. One doctor told another family it was the worst week of his life. So when he messaged to say he couldn’t be at her funeral because he was going on service the next day and wouldn’t be able to do his job effectively if he was in that headspace, I understood. That humanity is what makes a doctor great. You want human connection in the moment when your life is turned upside down. 

Find your translator within the care team.

The flip side of the previous point is that not every provider is equipped to handle emotional discussions. Just because someone is a good doctor, does not mean they are the most equipped to be a good communicator. If you find yourself in that situation, try to identify a physician assistant or well-trained nurse who can help to translate the information into a language you understand and/or provide you the emotional support you need in the moment. 

Patient engagement was never meant to replace providers. It was meant to meet them and move shared decision-making forward. But shared decision-making requires shared understanding.

When families and clinicians are given the same information, the same language, and the same space to ask hard questions, better decisions follow — decisions that honor both clinical expertise and lived experience.

At Rona’s FUN LAB, we believe the future of pediatric care depends on that partnership. Not louder voices, but clearer ones. Not choosing sides, but building bridges so that families feel informed, supported, and truly seen, and providers are empowered to practice medicine with both rigor and humanity.