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What’s Your Motivation for Being a Patient Advocate? And What’s Holding You Back?

Earlier this week I took part in a focus group discussing the issue of whether or not patient volunteers should be reimbursed for their time. This goes beyond paying for parking or mileage, but rather providing financial compensation for speaking at conferences, sitting on medical councils, participating in focus group and the wide variety of ways patients give of their time to improve our healthcare system.

I’ve previously written about the topic of paying volunteers. It was an article that sparked a lot of discussion, and continues to be debated in social media.

In a nutshell, my thoughts on patient compensation is — it depends on the time commitment and input required. If a patient is sitting on a committee with regularly scheduled meetings involving (what is often lengthy) meeting preparation and follow up, the patient should receive compensation. Especially since the patient is likely the only person at the table not being paid. Same goes with speaking at conferences. The time commitment is not limited to the length of the presentation, rather includes preparation time, travel time and attending the conference.

This brings me back to the focus of this article. Why do you volunteer?

Sitting on a focus group of eight people, I was reminded of the broad range of experiences, interests, energy and motivations patients have for volunteering. Most of the people in the room were volunteering to help right wrongs they had experienced.

You know the ones — doctors not taking their concerns seriously, having their medical issues overlooked when early intervention could have made a huge impact and watching a family member suffer or struggle navigating a complex system.

What was common was the intense desire to play a positive role in changing healthcare to be truly patient and family centred. Yes, many hospitals and medical practices say they are patient and family centred — but what are they actually doing to live this each and every day?

Another theme that emerged in our discussions was the various challenges that holds people back from volunteering as much as they would like. There’s the obvious like work and family commitments. But what interested me was the more subtle barriers — health issue, fear of being taken off of disability benefits (if you can volunteer you can work) and lack of respect (feeling a patient is a box to be ticked off versus an equal participant).

It’s these subtle barriers that needs to be addressed if we want to include patient voices in a meaningful way. But yet these are the barriers that patients will rarely voice. After all, who wants to admit they feel they are a token participant? Or ask for special accommodations to participate due to their medical condition?

Sure, there are vocal patients that have no problem having their voice heard. But this is the minority. Rather many of the patients I’ve spoken to are so exhausted or overwhelmed living with their medical condition or current situation, that it’s not worth the effort (which can sometimes be a lot) to have their voice heard.

So here’s the challenge — modifying and evolving how we engage patients to ensure we have a wide representation of voices. Yes, patient compensation is one way. But this still doesn’t address the subtle barriers.

Rather, I encourage patients and healthcare providers to have the open and honest conversations that can be uncomfortable. Talk about how patients can truly be supported (even if this means thinking outside of the box and using new ways to engage).

For our healthcare system to meet the needs of all patients (which is a constantly moving target), we need to value, respect and engage patient volunteers as individuals. This means getting to know them as people and looking for ways to get their input in a way that supports the patient not the system.

While these might be uncomfortable steps to take, it’s the only way we can offer the patient and family centred care that’s more than a tagline on a website.

Writer, communications professional, speaker and patient advocate. Visit www.howtocommunications.com for free communications tools to help share your stories.

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