Survey Says! The Results Are In

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We privately paid, independent, professional patient advocates “tend to be older, white, female, more highly educated, and have other medical training or past careers in related professions.”

…. or at least that is one conclusion drawn by the surveyors — those who built, issued and analyzed the first National Health and Patient Advocate Survey.*

Both private, self-employed advocates, and employed advocates (hospitals, insurers, employers), were surveyed. Whether or not you were one of the folks who took the survey, if you have any interest in patient or health advocacy as a profession, you’ll be interested in the results.  They were issued June 30 – you can download the report from here.

But that’s not the best news from the results… The best news is…

(drumroll please!)

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Fool Me Once, Shame on You, But Fool Me Twice….

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From bold-faced lies to misrepresentation – facts that aren’t facts, withholding information, skirting the code of ethics, and shades of truth – honesty and the advocacy business have been on my mind. I’m eager to hear your opinion on the subject, too.

My thought process was actually triggered by something that has nothing to do with advocacy at all, something that seems relatively innocuous, but then, maybe not-so-innocuous at all: the purchase of a 5-lb bag of sugar to bake holiday cookies last December.  Now a 5-lb bag of sugar has always been a 5-lb bag of sugar and has yielded a certain number of batches of cookies. I’ve been buying 5-lb bags of sugar all my baking life, so I grabbed the bag off the shelf at the store as I do every December, knowing that cookie baking was in my near future.

Except that this time, that 5-lb bag of sugar was (you guessed it) only 4 lbs!  It didn’t cost any less, but it had 20% less sugar in the bag. Yes, it was labeled correctly, and no, I had not read it carefully enough. But that is SO FAR beside the point. Old habits die hard.

So now?  I will never trust that store again when it comes to purchasing sugar – or anything else that I have trusted to be of a certain size. Sugar isn’t the only problem. Many other kinds of foods, including cereal, frozen vegetables, orange juice, pre-packaged produce and meats. A pound is still a pound, but a package that has always been a certain size is rarely that size anymore. Fool us all! That cummupence got me to thinking about other places in life where things are not what they seem to be. For example – the healthcare system. For people of a certain age or older, the healthcare system was always accessible and available, provided what we needed when we needed it, through kindly and knowledgeable providers, and at an affordable price (or no cost at all.)

But now, in 2016, that healthcare system no longer exists – not in the US anyway. Period. No patient accessing the American healthcare system can trust any portion of it anymore. We expect 5 lbs of sweet care, and we’re not getting it…

We’ve been fooled once, twice – and now it seems – will continue to be fooled forever…

… which is why people need patient advocates. So, in a way, that “Fool Me Once” led to a new profession in which we are all keenly interested. While we love the work we do, it is sad, in a way, to think about why we are called upon to do it.  People can’t trust the system, so they hire us to reclaim the honesty.

My thought process then turned to patient advocates ourselves, and the foundation upon which we are building our profession. Recently I have had conversations with advocates that suggest to me that our foundation is being chipped away at by some practicing advocates. Among us are people who are, sometimes innocently (sometimes not-so-innocently) violating the honesty, ethical standards, and expectations our profession demands, even if we have no formal way to demand them yet.

And that’s a problem. We’re very new, and we have only one chance to make that positive, ethical, above-reproach first impression. When some advocates aren’t on board with that approach, it becomes a problem for the entire group of us – those of us who are trying to right the healthcare system wrongs described above.

I’m going to provide two examples – one this week, and one soon – and some of you will see yourselves. I fully expect that some of you will be appalled, possibly upset with me, because you’ve not thought of these as violations or misrepresentations. Some of you innocently don’t realize these transgressions; but now, as of reading this post, you are on notice – now you will. 

Whether or not you’ve violated your ethics intentionally or innocently, please look at this not as judgment, but as a time for correction. Continue Reading →

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Revisiting the Case of Farid Fata – Why Patient Advocates Must Take Notice

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In July 2015, we took a look at the case of Farid Fata, the Michigan oncologist who is now in prison on fraud charges because he diagnosed and treated more than 500 people for cancer they didn’t have, many of whom died.

Yes – you read that right.  You read the part about treating more than 500 people for cancer they didn’t have.  And, I hope you caught the part that he is in prison on FRAUD charges – not murder, not manslaughter – nothing that recognizes the horrible physical condition he left those patients in after aggressive chemo and radiation. Whatever he could make money from, that’s what he did, and that’s why he is in prison.

See:  A Second Opinion Isn’t Good Enough

Shortly after publishing the post about second opinions, I wrote about how, if any of Fata’s patients had hired a patient advocate, they would not have become victims. There are tasks we do to help our clients that would have prevented harm once we were hired. 

See:  How Professional Patient Advocates Would Have Stopped Farid Fata

Then, last night, NBC’s Dateline took a more in-depth look at the case of Farid Fata, featuring interviews with a number of the patients he had treated, plus an interview with a nurse, Angela Swantek, who figured out what he was doing during a job interview three years before Farid was arrested. No, she didn’t take the job. Instead she blew him in – and the State of Michigan did nothing about it then. (I say KUDOs to her and a pox on the house of those people who decided not to investigate.)

What I learned during the Dateline interviews was that Continue Reading →

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Off to a Running Start!

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During the next few weeks, just prior to January 1, our brains begin to process the “Oh no! A new year is about to arrive! It’s time to make another New Year’s resolution!”  And then, the thought we all try to suppress… “… which I’ll give up by the end of January.”

Yikes! That’s no way to get started, feeling as if we’re going to fail before we even get going!

I’m no different. I undertake this annual process just like everyone else does. And yes, usually by the end of January, I’m as guilty as almost everyone else who gives up on their resolutions, too. Year after year after year…

This year…. OK, so this year I’m promising myself it’s going to be different. You know the definition of insanity – it’s repeating the same behavior and expecting different results, so THIS year, I’m going to try NOT to repeat the same behavior.

… Starting with timing and its effect on preparation. Part of the problem is timing!  We expect to throw the switch on changing out a bad habit, or any non-productive habitual behavior (or lack thereof) – but we just aren’t prepared to make that change. Is it possible that lack of preparation is what has stymied us in the past? Is it possible that better preparation for such big changes will improve our success rates?

Here’s what I’m talking about…  two personal examples, both putting me out on a limb, but in an effort to lead by example for you I’m making a vow to change – and I’m doing it NOW, before January 1. I am prepared. I have a running start….

<gulp!>

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Making the Case for Nonsense

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I suspect this discussion is going to surprise you as much as it surprised me.  The topic is Nonsense, but not Nonsense by its classic definition.  No, this Nonsense is quite different, and, frankly, sometimes it chokes me up.

Just published a month ago, Nonsense: The Power of Not Knowing is the title of a new book by Jamie Holmes. Jamie is a Future Tense Fellow at New America, a non-profit, think-tank / forum / media platform that promotes the intellectual study of politics, prosperity and purpose. Part science, part exposé, part business lesson, Nonsense will surely leave you looking at your world very differently. It is extremely well-researched, easy to understand and, truly, just fascinating.

Specifically, Jamie’s Nonsense promotes ambiguity, its great utility for big decision-making, and its role in improved outcomes. And he makes a very good case for it.

Not what you expected, right?

In my lifetime, I have never handled ambiguity well. To me, it’s anxiety-producing limbo. It’s the road to hell – not knowing – not having the answers I think I need – not knowing how to deal with an important situation because I don’t have the important details. To me, ambiguity becomes an additional problem that just exacerbates the original problem. I can’t solve my problem or formulate my plan when I don’t have all the facts.

I raise this today for a few very different reasons. Continue Reading →

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