Patient Advocates and HIPAA

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Lately I’ve run into questions and discussions about patient advocates or navigators and HIPAA , so it seems a good topic for today’s post.

I’ll begin with a disclaimer:  there’s no one on this green planet that can give you ALL the answers as they relate to HIPAA!  No, not even the lawyers who live it every day.  It’s complex and daunting.  But there are some basics that might be useful. 

Here are the basics that can be useful to advocates:

1.  It’s HIPAA, not HIPPA.  HIPAA stands for the Health Insurance Portability Accountability Act.  Notice, it doesn’t say anything about information (which is what it’s really about), nor does it say anything about patients.

2.  HIPAA was originally  intended to protect patient information from falling into the “wrong” hands electronically.  The laws were passed in the 1990s as fax machines were being used more and more and the Internet was beginning to be used to share personal information. HIPAA was intended to address any sort of electronic sharing of records.

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Improving Patient Relationships – What I Told the Providers

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To say my trek to Alaska was overwhelmingly positive wouldn’t begin to touch the real experience.  Alaska itself was glaciers, salmon, midnight sun, king crab legs, and learning that in Fairbanks everyone has an extension cord popping out the front of their cars, so they can plug them in during the winter to keep the engine and oil from freezing. Who knew?

But the most fulfilling experience was working with the people who attended the workshops I taught.  Warm, open, receptive, fun, willing to participate and learn, they were doctors, nurse practitioners, nurses, nurse educators, dieticians, pharmacists, a psychiatrist, front desk people, techs of all flavors – you name it, they were there.

Since this invitation to speak to providers first came along last February, I have looked forward to the opportunity with excitement – and a bit of apprehension.  I’ve often stated my own disapproval of doctors who write books to tell patients how to be smart patients. I consider it to be a bit like the doctor-foxes telling us chicken-patients how to behave in the hen house.

So it was a little unnerving to realize that, in effect, I was doing almost the same thing – being the patient-fox telling the provider chickens how to behave in THEIR hen house!  But my apprehension was unfounded.  I was well received – even embraced.

The topic:  Improving Patient Relationships.  The basis:  The health systems in Alaska are mostly government-based.  A large percentage of the residents are either military, or military veterans, or native Alaskans who get free healthcare – many of whom have a sense of entitlement and little patience for a system that isn’t ready to serve them at the very moment they want to be served in the very manner they want to be served.  It won’t surprise you to learn that there is a lot of frustration to go around.  The goal:  to provide tools to these providers to help them serve their patients better by improving the relationships they develop.

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What Do Your Patient Clients Expect from You?

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Ilene Corina is a long-time patient safety advocate who often sits by patients’ bedsides in hospitals to keep them safe during their hospital stays.

A recent blog post of hers asks the question: when a patient or caregiver hires a patient advocate, what do happens if, despite everyone’s best efforts, the outcomes are negative?

Of course, the answer depends on a number of factors, including the fact that not all advocate services are cut and dried and easy to define.

Further, I have to think that sometimes an advocate is hired with one set of expectations, as understood by the advocate and perhaps even recorded on paper.  However I think it’s entirely possible that even though the words say one thing, the patient’s hopes, and unspoken expectations may be something else.

That can be a danger zone for an advocate. Here are some examples:

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The Great Divide: The Haves and Have Nots

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The health and patient advocates who are listed at AdvoConnection are all private practice advocates; that is, they work directly for patients and the patients pay them.  Their services are not covered by insurance, their services aren’t donated or free.  This is how these advocates make a living – they are paid by patients or caregivers.

That seems to upset some people, and lately, it seems like a number of people have taken some sort of offense at that idea – as if patients or caregivers should not have the right to seek private help for their navigation through the healthcare system, or should not be able to call on someone to help them organize, or decrease their medical bills…. or that the very talented group of AdvoConnection members should not have the right to start a business offering the services they want to offer.

Seriously?

Here are the reasons I believe that attitude is so misguided:

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Need to No – Giving Too Much

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One of my favorite things about patient advocates and navigators is that they are very generous, kind and giving people. They figure out what needs to be done, and they step up to the plate to do it.

But one of my frustrations with patient advocates is that some are too generous, too kind, too giving.  Too many have never learned where to draw limits, how to assess when they’ve taken on too much, or are in danger of taking on too much. They just don’t know how or when they “need to (say) no.”

Conversations with two APHA members remind me of this.  And it’s worth sharing with you because it may give you the kick in the backside needed to learn to say no when you know you should.  Sometime before you begin dropping all those balls you’re juggling.

One case is an advocate who I will call Molly.  (We have no members named Molly, so don’t try to figure out who I’m talking about!)  She lamented the fact that she just didn’t have enough work, and was worried about keeping her business afloat – yet – she told me how busy she was with clients. I finally figured out that all those clients were people she was helping for free.  They needed help, they could not afford to pay her, so she just began helping them anyway.

How very generous!  Remarkably generous, really.  And I applaud her for that – except – in effect, she was volunteering her way right out of business.  All her time was being spent helping those folks for free, instead of doing marketing, making phone calls, drumming up some speaking opportunities – tasks that could help bring in paying business.

Not to mention the level of stress  (and loss of sleep) when we are not only overworked, but worried that business isn’t going well.

“But,” you say. “Those people need help too!”  And I agree.  But there needs to be a point where you realize that if you spend your time working for free, and don’t stick to building your business, you will go out of business.  At that point, you can’t help anyone all.  No one. Not on a paid basis OR on a volunteer basis, because you will have to go out and get a job that will make up the difference. It’s not worth it.

The solution?

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