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The Tragedies That Keep Me Up at Night

The collision of my two professional worlds is keeping me up at night. It provides a cautionary tale for private, independent patient advocates.

Not all readers of this blog know that I have my feet planted in two parts of this patient-assistance world.

My first foray into healthcare started in 2004 with a horrific misdiagnosis which resulted in a change of careers (from being a marketing consultant) to becoming an expert in patient empowerment. By 2005 I had started writing on patient empowerment topics. Then in 2006, I began doing a great deal of public speaking across the US – and by the end of that year, I had sold my marketing company to focus on patient empowerment full time. I branded myself “Every Patient’s Advocate.” In 2007 I started the Patient Empowerment site for About.com, wrote my first book for patients in 2010 – etc., – but the important point here is that I have a whole “life” in patient empowerment.

My emphasis on working with private, independent patient advocates started in 2007 after conversations with hundreds of patients who just felt that empowering themselves was more than they could handle when they were sick. That’s when I first conceived of the idea of helping to build the profession of private advocacy, which really began to take off in 2009 when we launched AdvoConnection, both the directory and the original membership organization (before it became the Alliance of Professional Health Advocates.)

In many ways, my two professional lives are two sides of the same coin. They crossover constantly, and support each other quite nicely. Sometimes it’s difficult to tell which is which, because I often publish articles for patients about private, independent advocacy – and I often sprinkle the advice I provide to advocates with bits of patient empowerment.

That last piece – the connection between my work with patients and my work with advocates – THAT is what has been keeping me awake the past couple of nights. Here’s why:

Several days ago I wrote an article at About.com entitled Tragic Reminders of the Uselessness of Doctor Ratings. It tells about the nexus between doctors who have recently been reported in the press for their heinous damage to patients (not to mention fraud) – and their gold star ratings at the most prominent doctor’s ratings websites. My warning to patients: don’t trust those ratings and review sites! They are pretty much worthless. Because they can be so easily gamed, really excellent doctors who may not have the best bedside manner may end up looking less than stellar. But even worse, really terrible doctors (like those I write about in the article) may end up looking like a good choice for a patient’s surgery or care. Danger Danger!

Now switch gears for a moment to the first of the upcoming APHA Business Workshops where I’ve been working on business and marketing topics for attendees. Of course, among those topics we’ll deal with insurance and legal questions as they relate to the services advocates provide. Among the services many of you provide is helping your clients choose the right doctors for their care. The recommendation we’ve always made is that an advocate never make one recommendation; rather, that advocates provide a list of possibilities to their client, let the client make his or her choice, and then to document that the client made the choice…..

However….

I began to wonder – how do you, as the advocate, decide what doctors to put on that list? And what sort of liability would it create if you listed one of these horrible doctors, your client chose that doctor, and as a result, something horrible happened to your client? The tragedy of losing a client or a client being harmed at the hands of a doctor who you recommended or listed would be overwhelming to most advocates I know. Not just because your heart would break for the client, but because of feelings of guilt and the potential for a lawsuit, too. (Thus that relationship to legal and insurance.)

There are no easy answers, of course, except to suggest to you – the advocate – that the criteria you use to make a doctor worthy of being on your list be buttoned up as tight as it can be. That would mean, for example, that you NOT rely on these doctor’s ratings sites. And THAT is why I can’t sleep, because I know many of you do! I’ve heard it mentioned, and despite my warnings, I know it’s still being done. I HOPE you aren’t the advocate who takes that shortcut!

I’ve also written at About.com on alternative ways of getting the information you need, but of course, it’s a much more time intensive job to look behind the scenes. But time intensive also means it’s safer – for both your client and for you.

I’ve begun a conversation in the APHA Forum about the best ways of finding the best doctors for your clients, asking how you approach the task. I hope many of you will contribute, ask questions, share information. It’s an important topic, having huge ramifications.

And, honestly, I just really need the sleep that will come from knowing I’ve done everything I can to further the conversation and to keep “my” advocates out of hot water.

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Agree? Disagree?

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