Just How Many Patient Advocates Are There?

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One of our AdvoConnection members asked me the question a few weeks ago:  How many patient advocates do I think there are?

I’ve got some educated guesses.

But there are actually three parts to the question.  Just trying to figure out how many there are is only the first part.  Figuring out the trends is also important.  And figuring out who can actually help patients in the ways they need help is the other.

Here are the answers I gave her.  See what you think.  Add or subtract. Change direction.  Whatever you think…. because you and your role are found in these notes:

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Setting New Standards for a New Profession – Your Chance to Help

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As announced to AdvoConnection’s members last week, we have been working on a prescribed process for advocates who find it necessary to terminate their work with a client – in effect, to “divorce” that client, professionally, legally, and with the least amount of difficulty for both parties.  (Members will find access to that protocol in this coming week’s Monday Member Mail.)

One step in the process is the recommendation about sharing the notes you’ve kept with the client you’re divorcing, and the question about whether or not you, as the professional patient advocate, should be keeping those notes after you have terminated the relationship with the client, and if so, for what period of time.

(Please note – I’m talking about the notes and records YOU keep – not medical records which are being kept by their medical providers. You may choose to keep those, too – but here we focus only on your own notes.)

So that’s the question – how long, if at all, should private health advocates keep those notes?

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More on the Paralysis of Analysis – It’s All About the “M” Words

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Last week’s post about the Paralysis of Analysis – the situation that many almost-professional private patient advocates find themselves in – those who hesitate to take that last step – the step of reaching out to new people and asking for payment for their services – the switch from volunteer (I can do this, I’ve done it dozens of times before) to paid professional, in business, make no excuses, doin’ it for a living paid patient advocacy….

It really struck a nerve.

One advocate wrote and asked whether I’d been reading her diary.  Another said she felt like Robert DeNiro in Taxi Driver (“You talkin’ to ME?”) A dozen posts in the AdvoConnection Forum (undoubtedly representing dozens of others who read those posts but didn’t comment themselves) indicated that yes – guilty as charged – they just can’t do it.

What’s “do it”?  They just can’t ask for money. They’ve been helping others for free for years, either loved ones or friends – and they hesitate to make that leap from volunteer to paid professional.

I understand that!  It’s hard to ask for money in the same ways it’s hard to toot your own horn by telling the world about your successes.  Asking for money for your professional expertise is a lot like bragging – and of course – as we were raised, we were all told not to brag! This is particularly true for women, those of us who have grown up in a society where our contributions and hard work have often been undervalued. (I note that none of the emails or Forum posts came from men…. )

So how is it that some advocates HAVE been able to make the leap successfully?  What do they know, and what are they doing – and doing well – that others just can’t bring themselves to do?

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Just Can’t Throw Your Business Switch? The Paralysis of Analysis

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See if this describes you:

You’ve been thinking about becoming a private health or patient advocate for awhile.  You know you can do it, you truly WANT to do it, you know people need help with their medical system challenges…

But something, undefined, just holds you back.

You may have taken courses in patient or health advocacy.  Maybe you’ve been a volunteer advocate for your family members, or friends. Everyone you know thinks it’s a great step for you.  You’ve connected with others who want to be advocates.  You’re quite good at getting at the heart of challenges patients face so you aren’t too concerned about whether you could actually do the work.

But something, you’re not sure what, just holds you back… You just can’t seem to make that leap from being a volunteer who steps in to help, to being a professional, privately-paid, patient advocate or navigator in your own private patient advocacy practice.

Sound familiar?

This is a conversation I have frequently with almost-advocates.  The most recent was this week with a PACE member of AdvoConnection, one of the most knowledgeable advocates I know.  But she hasn’t flipped that switch yet.  No – so far – she just hasn’t officially opened her practice.  She just hasn’t thrown that switch.

It’s called the paralysis of analysis – our tendency to over think, to worry that we’re not doing something exactly right, to be concerned that we’ve missed some important detail…. to the point where it stops us in our tracks.

The good news? There IS a cure. The bad news?  That paralysis of analysis keeps us from pursuing that cure, actually makes us do things we would never do otherwise and, worst of all, prevents those patients we would help from finding us and getting the help they need.

In other words – if you are among the paralyzed, there are people getting sicker or poorer because you haven’t thrown that switch.

There are a number of reasons I’ve been able to identify that cause the paralysis of analysis, and they are all about questioning one’s capabilities:

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Recognizing Private Professional Patient Advocates

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This is it! 

Private Professional Patient Advocate Week (PPPAW)  is recognized this week, March 11 to 17, 2012. It’s a time to  help patients and caregivers learn the many ways they can benefit from the assistance of private patient and health advocates and navigators.

This year there are 21 people participating as featured advocates on the special website developed for them.  They have shared stories about their successes, and we invite media to contact them and interview not only these fine advocates, but the patients and caregivers they have helped, too.

A sample of stories:

  • A man who contacted one advocate on behalf of his brother, a disabled Vietnam Veteran with PTSD and substance abuse problems.
  • A grandson who lives in New York City needed help for his grandmother in Tampa, Florida and called upon an advocate who could provide peace of mind for the entire family.
  • A career woman who met with pain, short-term memory loss and other troubling symptoms and could not get a diagnosis, until she contacted an advocate who helped find the right answer – multiple sclerosis.
  • A gentleman who was enjoying a cruise with his children and grandchilden,when his health deteriorated to the point where the family needed to call in help during the vacation…. This advocate flew to his bedside at an island hospital to help him get the medical assistance he needed.

… and many more great stories…

In each case, these advocates are finding that their attention to the details of their clients’ stories, their ability to listen carefully (beyond what most providers have time for, their knowledge of the health care system and ability to work around it) their great problem solving skills and creativity, and mostly, their passion for helping these folks who need their help so desperately – all of it is paying off.  It’s win-win for the patients, their caregivers and the advocates, too.

If you haven’t already done so, take a look at the Private Professional Patient Advocates Week website.

Learn a great new metaphor for the work we patient advocates do.

And pass the word to friends, families and co-workers about the excellent work these advocates – and others – are doing every day.


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