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Advocating – It’s Like Nailing Jello to a Tree

July 24, 2011 2 comments

(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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Patient Advocates and HIPAA

June 27, 2011 2 comments

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.  I’ve learned about them in my work and writing for patients.

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

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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Standing Up for Our Patients – Those Aretha Franklin Moments

April 18, 2011 1 comment

This post asks the question:  At what points do we go to the wall for our patients?  And when we need to go there, what’s the best approach?

Scenario: You’ve accompanied your patient-client to a medical appointment and the receptionist is rude to your patient when you check in.  Do you say or do anything?  And if so – how?

Scenario:  As you sit by your patient’s hospital bedside, a nurse comes in to change a dressing already wearing gloves.  You ask her to wash her hands and put on new gloves and she cops an attitude.  Do you insist?  And if so, how?

Scenario:  Your client needs to make a very difficult medical decision and has asked for your help to weigh the pros and cons, and to uncover additional possibilities.  You’ve walked him through all the possibilities – including those the doctor provided, and others you learned about through some research you did on his behalf.  His choice is not the same as the doctor’s recommendation, but when he gets to the appointment with his doctor to share his decision, the doctor tells him he’s making the wrong decision. Clearly uncomfortable, your client begins to backpeddle, to default to what the doctor has recommended.  Do you speak up on your patient’s behalf?  And if so, where do you start?

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Insurance Reimbursements? Not Exactly a Pot of Gold

A recent post from a member advocate in our AdvoConnection Forum asked if any of our members have experience with working with self-funded insurance to offer patient advocacy services.  Wouldn’t that be a great way to establish a big client, with a pot of money that was ready to be paid to private patient advocates?

There were no replies to the question.  That doesn’t mean that no one has experience with these reimbursements. It just means that no one replied to the question.  BUT – the reasons no one replied may be a version of the following:

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And Now a Word for Patients….

Last week we recognized Private Professional Patient Advocates Week, and across the country, some great stories showed up in newspapers, on TV, online and in radio broadcasts sharing stories of patients and caregivers who have been helped and the advocates who have helped them.

Some of the stories, both reviewed last week and over the past few years, are amazing – high end cancer protocols that were never mentioned by physicians, but were brought to patients by their advocates.  Complementary therapies, and wellness strategies that patients feel have been useful to them.  Thousands of dollars … Read more…

Private Professional Patient Advocates Week

March 14, 2011 1 comment

Patient advocates and navigators are my heroes.

As such, I am thrilled to announce the first Private Professional Patient Advocates Week (planned to be an annual event) – a week of recognizing the talents and contributions of the several hundred private patient advocates across the US and Canada.

“Thrilled” may actually not be strong enough.

Over the past couple of years, I have had the privilege of meeting dozens of private advocates – people who are dedicating to smoothing the difficult path through the healthcare system.  They lead their charges to improved health, they protect them from medical errors and infections, they help their patients learn and understand more about their diagnoses and treatment options, they explain pros and cons to help patients make choices, they juggle appointments among providers and review medications to be sure conflicts aren’t creating problems when the intent was the opposite. Then they save them money or at least make sure it’s being spent wisely.

And that all happens before lunchtime.

It seems like a week isn’t enough time to provide due honor.  Patient advocates and navigators devote their lives to improving the lives of others.  There is no more noble calling.

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