Jul 21 2014

Mentors and SIGs – Our Best Resources Yet

tshirtWhen APHA and AdvoConnection were launched in 2009, the resources that existed for starting and growing a private, independent advocacy practice were few and far between.

There weren’t many advocacy experts, because with only a few exceptions, there just weren’t many people with the track record to call themselves experts. Certainly there were experts in different useful topics; for example lawyers or insurance people who could take what they knew and apply it to advocacy. So we took advantage of those experts’ good graces to build the first foundations for practices going forward. We still rely on them, and appreciate their help, today.

Now fast forward to today.

These 5 years later we have dozens of experts in almost every aspect of starting and growing an advocacy practice, in the advocacy work itself, in patient education, and more… Early adopters who have ‘been there, done that” – and would be happy to show off their T-shirts. Real advocates. Real success stories!  Even among those who haven’t launched their practices yet, we have almost every topic imaginable represented among our APHA members – people who can speak to the expertise they have brought to advocacy, and what they have learned along the way.

Now we’ve made it easier for you to find them – and for them to help you.

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Jul 14 2014

The Real Cost of Selling One’s Soul


I heard from a friend that he recently sold his start-up business after years of building it to do just that.

Wow!  I was so impressed!  “Take a break!” I replied. “I can only imagine how much work that was and how much money you must have made!”

Yes, he told me. It was a LOT of work and he is exhausted. But, he confided, he really didn’t make much money in the sale.

What?? I was flabbergasted… Then I learned why. It seems that he and his partners, in order to raise the money they needed to make their business so enticing and salable, had given away most of the company to investors – first angels, then later venture capitalists – so that by the time they sold it and all those investors took their chunks of the profit, there was little left for the original idea guys who had started the venture. (ouch!)

It got me to thinking.

Over the years, I have been approached by businesses that want to “support”my work. The first time it was a pharmaceutical company that wanted to pay me to speak to patients diagnosed with the diseases their drugs treated, teaching those patients about empowerment principles, and (oh, by the way) about the great work their company was doing. The offer came very early in my patient empowerment career and I was really hurting for income. I was so hurting that I didn’t know if I could keep doing the work I wanted so badly to do! Their offer was extremely tempting. I gave it some serious thought…

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Jul 07 2014

Turning Adversity into Proactive Survivorship

upsetwomanIt’s been a tough week. From the initial blow, I’ve been a poster child for Kubler Ross’s five stages of grief. At this point I’m probably mid-way between depression and acceptance.

If you are a subscriber to my patient empowerment newsletter (not our APHA Monday Mail, rather, my Every Patient’s Advocate one) – then you have already heard my news – I sent out a heads up last Thursday just before my About.com newsletter went out. (If you aren’t a subscriber, why not? ;-) Here’s a link. )

The news is that after almost 7 years and 2000+ articles, out of the blue, with no warning, I was terminated from About.com. The only reason given was that it was a “business decision.” I’ve had my say on that at my personal blog.  You can find details here if you’re curious.

To say I was stunned is a major understatement. Shocked, upset, angry, frustrated – that’s a start. It’s a blow to my ego, a hit to my income, and a blindside to those people for whom I have written, and provided advice and resources for all these years. The feelings have been very similar to those I felt when I was diagnosed with cancer.

Ironically, it happened on June 30 which was 10 years to the day my cancer misdiagnosis journey began – the journey that set me on the path to patient empowerment, later advocacy, working and interfacing with all of you.

That journey has made me a proactive survivor.

What? You’ve never heard of a proactive survivor?

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Jun 30 2014

Henry Ford, Mary Kay, Success and Patient Advocates

180782595It’s a holiday week, a quieter time for many businesses, and for that I hope to leave you with some food for thought to ponder your success as an advocacy practice owner…

One of my favorite quotes is one that has been attributed to two well-known people.  Henry Ford said it first:

If you think you can do a thing or think you can’t do a thing, you’re right.

Then Mary Kay Ash (as in cosmetics) put it more eloquently:

If you think you can, you can. And if you think you can’t, you’re right.

Of course, the translation of both is that our ability to accomplish what we want to accomplish is all in our heads, in our attitudes. It’s less about ability and more not letting anyone – mostly ourselves! – convince us that we aren’t good enough.

The problem is – how many of us have those voices in our heads that tell us that we are “less” than what it will take to succeed? How many of us let our heads stand in the way of our success?  I know it happens frequently. In the past when I have written about the Paralysis of Analysis, I have heard from many of you, asking if I have been reading your minds.

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Jun 23 2014

I’ve done advocacy for friends and loved ones all my life. Now I just want to get paid for it.

screamingladyThose words….  I wish I had a nickel for every time someone told me “I want to join the Alliance of Professional Health Advocates because I’m good at advocacy, I’ve done it for years for friends and family, and now I just want figure out how to get paid for it.”

Honestly?  Sometimes those words make me want to scream, because I know they will never make that leap.

The answer is actually very simple (it’s only four words!), and is provided below. The problem is, no matter how simple the answer, no matter how many opportunities they have – the majority of people who can make that statement will never be paid for independent advocacy work.

Why not?

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Jun 16 2014

Teaching Your Clients to Fish Starts by Leaving the Rod and Reel at Home

fishing“Give a man a fish and you feed him for a day; teach a man to fish and you feed him for a lifetime.”  (Maimonides)

As a former classroom teacher, and now a teacher of advocates, I’ve always embraced the “teach a man to fish” concept. It’s part of my core. It’s in my DNA. It’s what I do with both my patient empowerment and my patient advocacy work. Many of you have been beneficiaries. And my great reward has been to watch you go off into the waters to successfully fish on your own as your practices grow and thrive.

It’s all about helping others help themselves.

Many of you, especially those of you who have worked in helping professions prior to your interest in patient advocacy (nurses, physicians, teachers) consider yourself to be fishing teachers, too. It’s your natural reaction to questions and situations to want to help by helping others help themselves. Whether or not you’ve ever heard that quotation from Maimonides, your approach to others has always been to teach them how to fix things themselves, rather than to simply fix things for them. You’ve taken the long view of how to help them the best, by giving them the tools they need to get what they need.

So it’s with some irony today that I’m going to tell you that in order to teach your clients to fish, to help them the best you can in the long run, to be the most successful advocate you can be, you must resist teaching them to fish in the short run.

Let me repeat that: In order to succeed as a private advocate, start by leaving the rod and reel alone.

Say what?

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Jun 09 2014

Hidden Agendas and Being Used

puppetYears ago, in my salad days, I took a new marketing job after being interviewed by a gentleman who seemed as nice as anyone I had ever met in a workplace. It didn’t take me long to learn my new boss’s friendly smile, and the words that came out of his mouth, only masked a hidden agenda that he hoped naive-me would help him fulfill.

The first clue that things were not as they seemed came when I was asked to sign off on some media invoices, in effect, giving Accounts Payable my approval to pay the agency that had submitted them. Even though media invoices didn’t fall within my purview, I reviewed them with the intent of signing them… after all, my boss had asked me to sign them. I just needed to know what I was signing. It didn’t take me long to realize the numbers didn’t add up. A couple of phone calls, and a little due diligence uncovered the distinct probability that the agency that submitted the media invoices was paying my boss under the table. Of course, if HE signed those approvals, there would be evidence against him – that’s why he had told ME to sign them.

I was so upset at the revelation that it made me sick – literally sick to my stomach. After a lot of fretting and soul searching, I took the invoices back to my boss, and made some feeble excuse about why I could not sign them. He grabbed them out of my hand, very upset with me. “I didn’t tell you to review them! I only told you to sign them!” he exclaimed. It wasn’t the only time he wasn’t happy with me, but wouldn’t or couldn’t provide a plausible explanation.

It was the first time in my life that I realized that someone else was trying to “use” me for his own hidden agenda. I’m sure there had been times someone had used me before – but naive-me wasn’t aware of it then. Over the next few years this scenario was repeated a handful of times – never anything I could prove, but always just disturbing enough.

Eventually I changed jobs, then later started my own business knowing that my own agenda is the only one I ever care to dance to.

I was reminded of that experience recently when I was contacted by a patient who knows of my work through About.com, but didn’t realize I also work with APHA. She sent me a half dozen emails in one day. She left three messages on my 888 number (which, by the way, is reserved for advocates and media and expressly states that patients should not leave messages because I will not help them by phone. She was clearly desperate for help.)

I returned her email, sent her a few links appropriate to the questions she had asked, and suggested she connect with a patient advocate through the AdvoConnection Directory.

She not only replied to my email, but phoned me twice more. She told me “there’s nothing in those links that helps me! I need YOU to talk to me! Someone with YOUR STATUS is the only way I can get what I need!”

I replied once again by email, suggesting again that she needed an advocate to help her sort out the issues, in order to get the help she needs.

Her reply was, “I tried talking to a patient advocate, but,” (and these are the telltale words….) “She wouldn’t do what I told her to do!”

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May 26 2014

Veterans, Soldiers, the VA – What They Represent to Private Patient Advocates

Dad-MemorialDay2014My husband is retired from the Air Force* after serving for 20 years during the Vietnam era. My father served in the Army Air Corps during World War II. These two veterans, the men I have loved the most, and who represent millions of other American soldiers, men and women, deserve all the respect Americans can possibly muster not only today, Memorial Day, but every other day of the year as well.

I raise this point because like you, I’ve been hearing and reading about the problems veterans have had getting the care they need from the VA (Veteran’s Administration) Health System. The allegation is that dozens of veterans died, and thousands more have been further debilitated, as they sat on waiting lists to see doctors or receive treatments they needed. Even if the stories are only partially true, they are heartbreaking for the loss of each of them and their families left behind, and they leave us angry that these people, who put their lives on the line for our freedom, would be treated so poorly.

So what does that have to do with professional patient advocates?

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