YOMs – and That Sense of Entitlement

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It arrived in my email a few days ago – a demand for a reply.

It came from a person who reads my articles at About.com.  She had sent me a question the day before regarding  trouble she was having getting copies of her records from her doctor. I had not yet responded to that email.

The second one arrived, shouting in capital letters:  WHY DIDN’T YOU ANSWER MY QUESTION?  I SENT IT YESTERDAY AND YOU HAVEN’T ANSWERED IT YET!

There it is.  A simple example of that sense of entitlement we all seem to be dealing with.  I get it in email.  You, as a patient advocate, probably get it more from phone calls from potential clients.  They phone you with questions – and think you should just give them the answers they need, as if you have time to just sit by the phone and answer questions for people, for free, day in and day out.

Like you owe them something.

Some even get mad if you don’t give them what they want!  One advocate told me about a phone caller who “ripped her a new one” because the advocate wouldn’t go to the caller’s home to try to convince her husband that he needed medical care.

Another advocate shared an experience with a potential client who was upset that he would be charged for her advocate services.  “That’s what I pay my taxes for!” he exclaimed.

Let’s call them YOMs, as in, You Owe Me!

There are a few reasons I can think of for the existence of YOMs:

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Using Advocacy Specialties to Create Niches

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When I glance at the many topics our AdvoConnection members post about in the Forum, I find certain people posting on certain kinds of topics.  That leads me to believe that they have special interests – or expertise – in those topics….

Which leads me to thinking that the patients and caregivers who are hiring them have interest in those topics, too.

So why not use them in marketing?

For example:

  • One such topic has developed around interest in integrative approaches to care.  At least one of the health advocacy educational programs was developed to focus strictly on integrative care.  A handful of our member advocates have taken coursework, or have otherwise developed special interests in integrative care – and I know from questions that come to me from patients that they are interested in integrative care, too. Continue Reading →
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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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The Great Divide: The Haves and Have Nots

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(Originally posted June 2011. Updated June 2019)

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 APHA 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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Craving Inside Information – from the Outside

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I mentioned last week that a dear friend has been diagnosed with a terminal disease.  I’ve known this for several weeks now, yet it still catches in my throat many times a day.  My work in patient empowerment and advocacy provides chafing reminders way too often that my friend is sick and that there is nothing – not.a.thing – I can do to help him.

Exacerbating my heartbreak is the fact that I am hundreds of miles away from where he lives, and I am a friend that doesn’t know his family.  That means that getting information is very difficult to do.

He was hospitalized about 10 days ago.  I do know that his family has rallied around him and I have been able to keep up… which is why I’m sharing this information with you.

His sister and daughter have been marvelous about posting almost daily to CaringBridge – a website that allows patients, families and friends to keep up with each other.  I’m able to go there are read about his progress.  I can add comments or send him messages.  It’s an opportunity for an exchange of information that if it didn’t exist, would leave friends like me entirely in the dark.

Caring Bridge is just one website that makes it easy for this type of information exchange about and for patients.  Care Pages is another one.  I actually wrote some Do’s and Don’t’s for using patient websites about 1-1/2 years ago (everything from understanding that they aren’t HIPAA compliant to being sure to wash your hands afterward if you are the person posting about the patient from a public, hospital computer.)

But until this experience, I didn’t understand just how important this ability was. I now understand the frustration of being on the outside, craving inside information.  “Important” isn’t even a strong enough word.  Vital, maybe.

So why am I sharing all this with you?

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