Advocating – It’s Like Nailing Jello to a Tree

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(No – that’s not Dad in the photo – but this gentleman is quite representative!)

Last week I shared notes from my father’s hospital bedside as he began his recovery from back surgery.  The majority of his hospital stay was safe and successful, although we continued to have big problems managing his pain throughout.

Dad was discharged to a skilled nursing center to convalesce and begin rehab.  He’s well on the road to recovery.  We have much to be thankful for.

As mentioned previously, my work does not typically include helping individual patients with their healthcare challenges.  I write and speak on advocacy topics, but one-on-one is not how I spend my typical day… So this hospital experience with Dad was quite the eye opener.

And what I learned is that being a successful patient advocate means learning how to nail jello to a tree.  (Just picture it….)  And it raised my esteem even further (if that was possible!) of all of you who work side-by-side with patients every day.

I do not know how anyone gets out of a hospital alive without having an advocate by his or her side.  OK, I don’t think it must always be a paid, private advocate who pitches in.  A family member, or someone who knows about the necessary safety measures will be able to catch most of the smaller problems.  But I learned that for those of us who are not experienced, it is impossible to anticipate the “saves” that professional advocates perform. And the magnitude of those “saves” is what is important.  They can be life-saving.

Some examples of the ones I caught:

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Notes from the Hospital Bedside

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Dad had back surgery Friday morning.

As many of you know, I don’t ordinarily work as a patient advocate. My work is about supporting patient advocates – so I look at these kinds of experiences as opportunities to learn, and to use some of the excellent advice I’ve learned from many of you over the years.

I’m relieved to say – I haven’t had much opportunity to make a difference!  Dad’s care has been quite good.  So, as his advocate, my last 72 hours have been…. well…. boring.

But there have been a few things I have observed, and a few things I’ve learned, to share with you. And two “saves” that may have been important – although – I prefer to hope they made no difference. More about that in a moment.

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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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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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