… and Now the New York Times

Posted by:

Over the years I’ve been asked this so many times – when do I think health and patient advocacy as a well-known profession will “arrive?”  As if there should be some sort of date on which a switch is flipped and the world begins to recognize, then hire independent advocates to help them navigate the healthcare system.

Truth is, I’ve been expecting that tipping point for years. But (true confession) the evolution has been slower than I anticipated. Despite my 30+ years of business experience, working with every size business in every area of business imaginable, my crystal ball is still somewhat tarnished and my prediction abilities remain challenged.

The answer remains:  I just don’t know. It has been growing steadily. The opportunities are apparent every day!  But… yes, it has been slower than I thought it would be.

So many advocates, frustrated because the profession isn’t more mainstream, and because their phones don’t begin ringing off their hooks the moment they hang out their shingles, ask me “Why can’t the Alliance make it happen?  Just do a lot of big promotion!  Why aren’t you pushing advocacy in national press?  Or doing lots of google advertising? or?”

Continue Reading →

1

Whinery – How to Make Your Fortune

Posted by:

Maybe you’ve heard that old joke:

Know how to start a winery and make a small fortune?
… Start with a large fortune.

On my recent visit to California, I was reminded of that joke. I was teaching APHA Workshops in San Diego and it came up twice:  first because one of our attendees brought me a bottle of wine from her northern California neighborhood (thanks MR – delicious!) and second….

Because we followed the money to improve attendees’ chances for success – great success! – as private, independent health and patient advocates… amidst some “whining” – because it’s a topic very few like to think about.

Here’s why and how:

Continue Reading →

0

Our Clients Need This ONE Skill the Most

Posted by:

Twenty years ago, prior to self-employment and work in patient empowerment and advocacy, I was the marketing director for my local community college.

In so many ways I loved that job. It was different every day and allowed me to meet and get to know people I never would have known in any other way. It required me to get out into the college community to meet faculty, other administrative departments, and students. It required me to have good relations with the press, and because it was during a recession, it required me to be creative and clever to bring in new students. Community colleges attracted so many non-traditional students — those who were older, or had been laid-off, or wanted to change careers; they had such interesting backgrounds and dreams. And the biggest challenge – the advent of using the internet for marketing. Can you imagine? Attracting students by using the cool new surfing tool – the World Wide Web!

As I said… I just loved that job.

But, unfortunately, yes, there was a downside, too.

Continue Reading →

0

Whack-a-Mole and the Zen of the Caterpillar That Became Lunch

Posted by:

Tuesday was a whack-a-mole day. One thing would go wrong, I would begin to fix it, only to find something else needed fixing, too. Details with new bank accounts (have you tried opening a new business bank account lately?), an incorrect tax bill from the city where I now live and do business, hiccups with our new phone system, and myriad technical problems with the ongoing redesign and redevelopment of the APHA membership website… 

Yes, whack-a-mole.

But Wednesday and Thursday, two experiences combined to give me new perspective, one I’ll share with you in hopes it will help you weather those whack-a-mole days when you need a new perspective, too.

Continue Reading →

2

Preventing Our Own Brexit, Saving Our Clients and Advocacy Practices

Posted by:

The whole world was fascinated last month by Brexit: the vote in Britain to leave the European Union. Would they leave? Wouldn’t they?

But to me, the most fascinating part was what happened the next day. Once the vote had taken place and the (bare) majority had voted to leave the EU, those who had voted to leave began to learn the real truth of what they had chosen, and realized they had been duped.

Yes, duped. Because the leaders on the “leave” side immediately disclaimed the promises they made. Ooops! they said!  No, we can’t really apply the billions of dollars we send each year to the EU to healthcare. We didn’t really mean that!  We lied to you because we wanted you to vote our way!

How could those politicians make all those promises they never intended to keep?  How did the majority of a citizenry fall for it? Why, now, do many of those citizens who voted to leave the EU wish they could take back their votes, because they have changed their minds?

Brits can blame themselves – period – for not being smarter about reality. They voted for something that wasn’t true or possible because they believed and shared what they heard and read, never vetting possibilities or veracity.  They Facebook-liked, and shared, and re-tweeted, and Instagramed, and discussed in pubs, all that misinformation, disinformation, political venom, disdain and hostility – never fact-checking, never discerning the truth.

tweet

They simply passed on messages that supported their own wishes or philosophies – even when they were lies.

… Exactly like we Americans are doing today with our presidential election and its issues.

It had quite the ripple effect. Because they shared all those lies and vitriol, the world became a more dangerous and unstable place. (Just what happened to your 401K the week after Brexit?  My point is made.)

So what does this have to do with health and patient advocates?

Continue Reading →

0

Survey Says! The Results Are In

Posted by:

We privately paid, independent, professional patient advocates “tend to be older, white, female, more highly educated, and have other medical training or past careers in related professions.”

…. or at least that is one conclusion drawn by the surveyors — those who built, issued and analyzed the first National Health and Patient Advocate Survey.*

Both private, self-employed advocates, and employed advocates (hospitals, insurers, employers), were surveyed. Whether or not you were one of the folks who took the survey, if you have any interest in patient or health advocacy as a profession, you’ll be interested in the results.  They were issued June 30 – you can download the report from here.

But that’s not the best news from the results… The best news is…

(drumroll please!)

Continue Reading →

0

Would You Draw a Line?

Posted by:

Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.*

As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident.

One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with.

He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply bounced ideas off each other.

While I respected his intelligence and the career he had built, I also learned from Glenn what desperation does to a patient. Which leads me to the topic of today’s post.

About two years into our friendship, Glen’s glioma was growing, and he still refused chemo. He had left his job, and spent his days in search of something – anything – that would make the tumor disappear.

For example, he found a “doctor” online who promised him that if he bought her DVDs, and prayed many times a day, his tumors would dissipate. He spent hundreds of dollars on DVDs. He prayed and prayed. He was so convinced her approach would work, until, as you might guess, it didn’t.

He found several other possibilities of similar import over the next couple of years. He would ask my opinion, and was always disappointed when I didn’t react with his same enthusiasm. My assessment was usually based on cost – not just money, but the cost to his physical well-being and emotional investment, too.

Then one day he sent me a link to a clinic he had uncovered, convinced it offered him THE solution, because it offered him THE cure. Continue Reading →

0

Balance in All Things – We Create a World of Good

Posted by:

Since moving last month, I now live not far from Orlando. Unless you’ve been living under a rock, you know the tragic and horrible events that have surrounded this city during the past ten days. From the killing of a promising young singer, to the mass murder of 49 young people, to a toddler’s death by alligator. I didn’t directly know anyone involved, but I can certainly speak to the pall that has been cast. The horror, followed by the myriad resulting emotions – sadness, dread, apprehension, and certainly the anger…

Contrasted with those events, this week my inbox featured two testimonials for APHA members.

Now – keep in mind that I receive testimonials frequently. Not a week goes by that I don’t get a submission from a member’s client that speaks in very positive and often glowing terms about how that advocate helped the submitter. It’s one of my favorite parts of my work.

But this week, receiving those good words affected me very differently. It was like the heavens opened and the angels began to sing! Because this week, the very good and beautiful words written about those advocates who have changed lives in very positive ways was a counterbalance to the very bad and ugly.

Continue Reading →

0
Page 1 of 32 12345...»