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Patient Partners — There’s Strength in Numbers

This week something incredible happened. I took part in a panel discussion at a university with another patient partner.

Why is this amazing? Because this was initiative we took upon ourselves to share our individual strengths for the greater good.

Okay, let me back up a bit. A couple of months ago this patient partner and I met at a healthcare forum we had been invited to attend. We both were unimpressed on how the forum was run, and more importantly, how the voices of patient partners were included (they weren’t). Over dinner, we critiqued ways the current healthcare system is using patients as token participants, discussing ways to engage patients in a more meaningful way.

Basically, over a yummy Malaysian dinner, we solved the problems of the world. Okay, maybe not completley, but we did take ownership of the problem of including patient voices versus just complaining (which really is a pet peeve of mine).

Being two dynamic women (if we do say so ourselves) we began to look for ways to collaborate. I’m a storyteller who lives in the world of emotions and she is more data and analytical driven. By working on our strengths, we knew there would be no stopping us.

And this brings me back to the incredible experience I had this week. My new patient partner friend was asked to speak about patient engagement on a panel made up of women with lots of impressive titles. She was the lone patient partner in a table of researchers. As part of her allocated time, she wanted to raise the topic of patient advocacy.

This is where the magic happened. Instead of asking me for some notes or reading one of my blog posts, she called me up and asked if I would share the stage with her. That’s right — work together.

When it came time to talk about patient advocacy, she called me up on stage and handed me the microphone. I condensed my two-hour patient advocacy workshop into about 6 minutes.

I share this story because it’s offers so many lessons in how to engage patient partners and include patient voices. It goes beyond checking an item off the list (do we have a patient on this committee — check). Rather, it’s looking at the strengths each individual brings, and finding ways to collaborate with others who have other strengths. Not every patient is suited for every engagement opportunity.

As for my friend and I, it’s about owning our role as patient partners. We don’t want to be seen as a checkbox on a list. Se we are standing up and having our voices heard. Together.

While this was our first time collaborating, I’m sure it won’t be our last.

To other patient partners reading this article, I encourage you to find ways to collaborate with others.

For those of you who are looking to engage patients, I challenge you to go beyond the checkbox. Be clear on what skillsets and experience you need from your patient volunteers, and think about how you can truly include their voices. Also look for ways for patients to collaborate. This helps even the playing field as we are often the only non-medical staff at the table.

This story has also appeared as a blog post on Learn Patient Advocacy.

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

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