When Is an Advocate Not an Advocate?

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Twice in the past week, I heard from people whose APHA memberships expired, explaining why they didn’t renew. In both cases excuses in the form of complaints about their memberships were made. A little bit of research turned up the facts that those complaints were at least misguided. I responded to each of them about their frustrations. In both cases, they felt insulted.

Now, don’t get me wrong. I receive criticism and suggestions on a regular basis, sometimes including good, usable, feedback. I’m always appreciative of constructive feedback and ideas even if it’s in the form of criticism. That’s how we improve the benefits APHA offers.

Further, I recognize there are many reasons someone might not want to renew a membership. Sometimes health challenges have gotten in the way. Sometimes someone just decides independent advocacy wasn’t a good fit for them. Most of the time I hear nothing at all.

But that’s not what these exchanges were. In both cases they were making excuses by using APHA membership as the whipping post. Not kosher.

Where have they been for the past year?  Why did they wait until their memberships expired to complain? I wonder how they think they can be good advocates for other people if they don’t even advocate for themselves?

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Powerful, Useful, and Beneficial — From HBO’s Vice Media: Patient Advocates Can Save Your Money and Your Life

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In April of this year, patient advocates convened in San Diego for the APHA Summits to mix and mingle, learn, and talk shop…

Joining us was the video crew from HBO’s Vice News, led by producer Amanda Pisetzner – a delightful group of young people, with so much talent and enthusiasm, asking great questions…

They worked in the background during our networking event, and separately they met with two of our advocates, AnnMarie McIlwain, and Karen Vogel, as they conducted their important work. The crew even met with client-patients who AnnMarie and Karen found were willing to discuss their own situations and results…

Bottom line – the most powerful public video we’ve seen, creating a very clear picture of the benefits of independent advocacy and why everyone needs an advocate.

We have arrived! (Note: if you attended the San Diego Summits – you might be in the video!)

I invite you to watch it – and then I’ll share a few steps you can take, too, not just to help boost your own practice, but perhaps to find yourself the featured advocate in a future media activity.

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The Rest of the Story X 4

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Channeling Paul Harvey today….

(Don’t know who Paul Harvey is?  Maybe you’re too young, or you never spent much time listening to Talk Radio… Paul Harvey was famous for his radio broadcasts called “The Rest of the Story.” His stories always featured a twist or turn, or something unexpected.)

Over the past few months, I’ve blogged about points, lessons, or stories, some of which have interesting follow-up or twists to them. So I’ve put them into one post for you – and thus we’re channeling Paul Harvey.

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When Life Defies Logic

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…then it’s time to get logical. And logic will triumph!

As many readers know, I’m in the process of coordinating our APHA Summits. We had our first Summit adventure in San Diego a few weeks ago. What a delight! We all learned so much from each other!  Next up… Newark / NYC, then on to Chicago, and two new groups of passionate advocates. (I can’t wait!)

What few people understand is the amount of preparation required to make these Summits happen. It’s not so simple as everyone showing up in the same place at the same time to connect with each other. Planning actually begins many months in advance when cities and venues are chosen, initial contacts are signed, the website and registration are set up… much to prepare.

Then in the last few weeks prior to each event, the actual choices are made for room set-ups (round tables? classroom style?), food choices (vegetarian? gluten-free? nut allergies?), and AV needs (are we doing powerpoint?  do we need a projector, screen, or wifi?)

Of course, each choice comes with a price tag. Hotel price tags vary. And sometimes, those price tags defy logic. And I mean DEFY LOGIC!

Which is one reason I say – when life defies logic, it’s time to get logical. As follows:

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