advocacy ethics

Merriam Webster, The Who, and Hacking Churnalism

Today we’re channeling The Who, Merriam Webster and one of my longtime favorite fellow patient empowerment buddies, Gary Schwitzer, who reminds me at least weekly why we just can’t trust the media without very careful review. As follows: I love a new word. When this one appeared in my inbox last week, I wanted to share it with you because it’s an important concept for advocates and patients alike. Today’s new word is: Churnalism.(Take that Merriam Webster!) Churnalism is the product of lazy reporters and journalists who, without further investigation or review, simply reprint (or broadcast) a submitted press release …

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Why I Hope These Pigs Never Fly – and You Should, Too

This is the question that has plagued me as the director of a professional patient advocacy organization since it was first launched. It’s a question that usually comes from someone who is just thinking about becoming a patient advocate, one who hasn’t yet gotten his or her feet wet in our growing puddle of advocacy, ethics and best practices, although sometimes it comes from a more seasoned, yet not-yet-financially solvent advocate. It is asked in a hopeful manner, as if it is the answer to prayers – or at least payment. It’s at the very least naive, and at the …

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The Advice That May Tick You Off

In 2012, I blogged about this very topic. One ticked-off reader then attacked me on Twitter. A day later, both she and another member of The Alliance of Professional Health Advocates left the organization, both citing the post. Ouch. But it was good advice then, and it’s still good advice today. So at the risk of provoking additional readers, I’m going to wade into those waters again. Since most of us are self-employed, in the process of either starting or growing a professional practice, you’ll find that this advice will serve you very well, even if it IS maddening or …

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Goldilocks, Dad and Finding Care That’s Just Right

My dad retired in the 1980s. In addition to his pension he had also earned health insurance coverage for the rest of his life. Over time, as you can imagine, the actual value of that insurance became more and more evident; In all likelihood, it was a many-years-of-life saver, because he lived until 2012. But then, I think his health insurance may have killed him, too. Dad retired early at the ripe old age of 60, because when he was 59, he was diagnosed with prostate cancer. His resulting surgery did not successfully remove all the cancer cells, so Dad …

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Alone, But Not by Yourself

“But she is so upset with me now!” That was the response from an advocate who wrote to me after an unpleasant encounter with a former client. Even though they had not worked together for more than a year, the client had contacted the advocate to ask for copies of her medical records. The client knew the advocate had acquired them when they worked together, she needed them, and she didn’t want to pay for them again. Fair request, certainly. The advocate should have been able to turn them over to the client quite easily, either electronically or on paper…. …

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8 Ways Your Advocacy Practice May Be Like The Giving Tree

(Channeling the Plain White T’s here…) The book is a childhood classic, Shel Silverstein’s The Giving Tree. It tells the story of a tree that gives all it has to a boy as he grows from little boyhood to adulthood. From providing shade and a place to climb, to allowing the boy to sell the apples it yields, to finally letting the boy (now a man) cut it down to build a house, and then later build a boat out of it. In the end, when the tree has nothing left to give, “Boy” simply sits on the Giving Tree’s …

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Can an Advocate Do More Harm Than Good?

Yes, sadly (although rarely) a patient advocate might do more harm than good. I was reminded of this recently when I heard from an APHA member who had picked up the ball from another advocate (not an APHA member) who had totally messed up the work a client-patient needed to have done – an advocate who had actually made the client’s situation worse. The problem-creating advocate had been working with her client through a hospitalization. As far as we know, that work went well. Her core business is medical-navigational advocacy. However, later, when the client’s hospital bill arrived, the client …

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