How to Go Beyond 'Token' Patient Engagement in Healthcare

Engaging patients and families is a hot discussion item right now in healthcare. Many websites have multiple mentions of providing patient and family centered care. Patient volunteers are included on committees and some hospitals have patient experience staff (often with medical backgrounds versus patient involvement).

On the surface, it appears patient voices and experiences are playing an active role in transforming healthcare.

Unfortunately, if you dig a bit deeper, going beyond tag lines on a website, you’ll find the reality is more “token” than actual meaningful patient engagement.

So how do we ensure patient voices are not only heard, but their knowledge is integrated into the services and programs they access?

1. We need leadership, not management.

It starts with how our healthcare organizations are run. Is the executive team made up of leaders or managers? The difference being leaders are looking to innovate, inspire and support people who have a vision for the future (regardless of whether or not it aligns with their vision). Managers are about processes, systems, and making sure everyone stays on task. While managers have a role, leaders are key to taking us from where we are to where we want to go.

Supporting and developing leaders is crucial for creating authentic patient engagement.

2. Clear vision.

The typical volunteer recruitment posting talks a lot about the volunteer position and little about who is needed to fill this role. Let’s look at a maternal health committee. The posting will provide an overview of the committee, its mandate, maybe a list of members, times of meetings and a bit about anticipated monthly volunteer hours.

What is lacking is a clear “who” — who they are looking for and how their voice will be included in the committee. For example, perhaps they are looking for “women ages 25 to 40 years old who have given birth within the last three years at a specific hospital. Ideally, we are looking for a woman who had a complex pregnancy, spending a minimum of 72 hours in hospital post birth and continues to access services in our hospital.”

The posting should explain the who in more detail so potential volunteers see themselves in the role. This also avoids getting the most common healthcare volunteers – retirees. Yes, retirees have a role, which is sitting on committees for services they are currently accessing.

I’ve sat on pediatric committees where I’m the only parent of a child under 45 years old. Seriously. While I respect the fact some retirees once raised young children, the realities of accessing healthcare have changed and we need to hear from parents who are living the experience now.

The problem of not having a clear vision of who you want is you are left accepting anyone who shows an interest. In many cases, this can be worse than just leaving the volunteer position vacant until you find the right fit.

3. Listening to and supporting patients.

It is essential to find a way to hear from patients. If they sit on a committee, don’t assume because they aren’t speaking that they don’t have something to say. It can be intimidating being the only non-medical person on a medical committee.

It’s the committee chair’s responsibility to check in with patient volunteers throughout the meeting or volunteer experience to ensure the patient voice is heard and included in discussions. Ask them if they have any questions or comments. Give them the space and support to lend their voice.

And when you do hear from patients, go beyond checking a box. Take time to reflect on what the patient is saying. Is follow-up needed with a one-on-one conversation to dig deeper? Have any red flags or new approaches been raised that need to be explored?

In essence, having a patient volunteer should be the starting, not the end point.

As a patient volunteer, I continue to push back and look for ways to engage patients in a meaningful way. However, this same commitment to changing the status quo, innovating and going beyond tokenism, needs to be shared by healthcare management and staff.

Healthcare organizations also need to be honest on how they want to engage patient volunteers. If it’s at the superficial level, fine, but be honest on how their voices will be heard. But if the words “patient and family centered care” are on your website, it means doing the work needed to make that a reality in all levels of the organization.

I truly believe the only way to achieve patient and family centered care is for patients to be an equal, not side voice, at the table.