Why It’s Time To Go Beyond 'Token' Patient Engagement

I’ve been actively involved as a patient volunteer since my son was born six years ago. During this time, I’ve sat on committees, spoken at conferences and attended workshops in my role as a volunteer. While it’s been great having a seat at the table, there have been many times I have felt it’s a “token” seat. I definitely haven’t felt I’m an equal partner.

And I know I’m not alone.

When I’ve had the chance to have candid conversations with other patient volunteers, the topic of being a token participant always comes up. I’m not saying it happens in every engagement opportunity but it happens enough, and too often, that we talk about it. A lot.

Going Beyond Token

So, what can be done to fully engage patients? It starts with changing the mindset around the engagement process.

Let me explain. For the most part, here’s how I imagine the conversation from the healthcare side (based on my experiences).

“We need a patient partner. Put a notice out, ask for volunteers and let’s see who comes.” It starts with checking a box. There’s little thought put into how the patient will be engaged, valued or heard.

Now, here’s how I feel the conversation should start. “We are really missing a patient voice and perspective. We need to recruit a patient who is passionate about the work of our group. But before we do that, let’s look at how we can engage the patient in a meaningful way. What training or support will they need to understand our work, process and how to fully participate? How can we carve out time to truly hear their voice and input? And most importantly, let’s make sure they feel welcome and included.”

Do you see the difference?

For those of you who work in healthcare and are rolling your eyes, thinking we already do this, I challenge you. Do you truly do this? Do you have an open conversation about how to meaningfully engage the patient partner — both with the team and with the patient? And do you take the time to check in with the patient throughout the volunteer experience to see how they are doing to find out what support they may need?

Welcoming Environment

Now going beyond the committees, where you (hopefully) take the time to get to know your patient volunteer, expand this perspective into a one-off or group settings (conferences, workshops, focus groups).

How are you welcoming and including patients? Do they have an opportunity to speak or are they just filling a seat?

At the end of a one-day forum I recently attended, a patient volunteer stood up and said — “I don’t want you to pity me; I want you to hear me. Truly hear me.”

He had the courage to say what many of us patient volunteers in the room were thinking. Listen to what we have to say and truly hear us.

This was an event that included a mix of government staff, healthcare professionals and patients. As one of the patient volunteers, I have to say, I did not feel welcomed or like an equal participant.

Right from the start, there was a barrier. We were asked to spend 30 seconds introducing ourselves at our tables. I started to say my name and a bit about me, when those around me broke into conversations with each other. And the organizer of the event, who was sitting at my table, patted me on the shoulder (true story) and said “thanks for coming” (cutting me off mid-sentence), then went to speak to someone else.

This set the tone for the rest of the day, yet all it would have taken was to honor the 30 seconds, let me introduce myself and make me feel welcomed. Instead, the barriers between patient and healthcare professionals were put up before the event even began.

While this may seem like an extreme example, it plays out in patient engagement opportunities every day — in subtle and not-so-subtle ways.

Time for a Change

So, what can we do to change this culture and engage patients in a meaningful way? As the frustrated patient volunteer said, I don’t want you to pity me. I want you to hear me.

Truly hear me. If you are a patient volunteer, what has been your experience? When have you felt valued and when have you felt like the token seat at the table? What would you like your patient experience to look like and how can you share this with healthcare professionals?

For those of you working in healthcare, how do you engage patients? Have you taken the time to plan how you’ll engage them prior to bringing a volunteer to the table? And if you work with volunteers now, how often are you checking in to ensure they are feeling supported, valued and heard?

We all need to take ownership of being part of the change, and this means having some honest and open conversations so we can go beyond a checkbox and being equal partners in transforming healthcare.