One of the things that has been keeping me busiest (as you can imagine) is talks about my book, book signings and interviews. It’s been fun so far! So I thought I’d share some links to videos, podcasts and more.

• I had fun talking to Dave Bullard from our local NPR station, WRVO about You Bet Your Life! You can listen to the podcast here. You’re welcome to listen to the entire conversation!  But if you want to hear just the section about You Bet Your Life, then you’ll find it begins right at 33 minutes and runs a total of 5 minutes.

• My chat with Kathleen Slattery-Moschkau for her syndicated weekend radio show was a blast, too!  We were able to cover quite a bit more ground than my conversation with Dave — I thank Kathleen for her enthusiasm about You Bet Your Life! Please do listen to this podcast because it will give you quite a bit of perspective about why you must take control of your own healthcare.

Great fun at book signings, too:

• At Creekside Books in Skaneateles, NY – great questions from the audience and many thanks to both the owner, Erika Davis and Laura Ponticello from Laura’s List of Books for Women.  They made my book launch just perfect!

• A big thanks to Marie Kulikowsky from Barnes & Noble in Dewitt, NY for handling what will be two book signings!  Yes — in an example of some of the most marvelous timing, the Syracuse Orange NCAA basketball game was scheduled for the exact hour as my book signing (hey!  I got there first!)  I emailed those on my list and told them we would reschedule the basketball game.  Afterall, I have a pretty good sense of what my friends’ priorities are — however — about two dozen people showed up anyway – including friends Leslie Rose McDonald and Cindy Masingill — here are the three of us:

….. and yes…. we have rescheduled for May 6th, 7 PM at Barnes & Nobel, Dewitt.

• Thoroughly enjoyed meeting so many people and answering so many great questions at the University of South Florida / Sarasota Lifelong Learning, too.  Truly engaged emPatients — a real pleasure.

• Finally — but certainly not least! — is a great article written by Amber Smith of the Syracuse Post Standard (yes, my disclaimer, Amber is my editor) — accompanied by a video, too!  Link to the article — or to the video below:

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So at least you know I haven’t been snoozing…. I do want to sell books, but honestly, I’m making next to nothing on those books. More than that, I want you to be an emPatient, too… it’s important. Especially knowing the road healthcare reform will take us down.

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However, if you think this post is going to be a call to action for Congress – think again.  While I am a firm believer in healthcare reform, and while I firmly believe we Americans deserve universal care – I also know that if you are already sick, or if you get sick today or tomorrow, or even next year, then healthcare reform isn’t going to help you anyway.

The one BIG benefit to all this healthcare legislative brouhaha, no matter what the outcome so far, is that it has forced us patients to realize that Marcus Welby has left the building.  The paternalistic, omnipotent doctor-as-God who actually cared about our medical outcomes has become an endangered species — one most of us will never meet in our lifetimes. Healthcare reform discussions have made this very clear:  American healthcare is not about health or care.  It’s about sickness and money.

So what have we learned?

That in order to get the good, decent care we patients deserve, we’re going to have to take matters into our own hands. Yes — US.  WE PATIENTS are going to have to do it for ourselves. We need to be EMPATIENTS (empowered patients.)  It’s a shift in mindset that those among us who are smarter and more attentive are realizing isn’t a choice.  If we want decent medical care in the United States (or, it seems, in most countries of the world) — we must make this shift in our thinking.

I hear people poo-pooing the use of the term “empowered.”  They don’t like it because to them, it suggests that someone must GIVE us power.

I don’t see it that way.  I see “empowered” as something we take on ourselves.  We take command of our care.  We take responsibility for acquiring the information we need, then making decisions for ourselves. We do that with a variety of resources, including physicians, other patients, and media information sources like the Internet, libaries and others.

If you think about it — that’s an entirely different way of accessing healthcare than most of us are used to.  It says that, in effect, we will no longer allow healthcare to be done TO us or FOR us.  Instead we will demand it be done WITH us.

That means it’s a whole new type of healthcare reform.
In fact, it’s PATIENT REFORM.

Are you ready to take up that cause for yourself and your loved ones?  There’s no argument over money here… it’s simply a recognition that if we are going to get the health and medical care we want and deserve, we are going to have to make it happen ourselves. It’s an approach to getting the right diagnosis, the right treatment, staying safe, and making sure you don’t lose your health because you can’t afford to access care.  It’s collaborative, research based, and helps us advocate for ourselves.

Here are some places to begin:

•  What’s an Empowered Patient? (or anything at the About.com Patient Empowerment site.)

•  You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve)

•  E-Patients.net (e-patients and emPatients describe the same thing – e-patients does not mean you need to understand electronic media.)

•  The Society for Participatory Medicine

These resources link to the dozens of other resources you’ll need, too.

Yes — this is it.  The beginnings of PATIENT REFORM.  Let those in Congress, the ones who have cadillac healthcare plans and don’t really understand what the rest of us deal with continue their bickering and corporate *ss-covering.  Let them continue to kow-tow to special interests who are more about making sure they keep their corners of the healthcare money pie, with little or no regard for patient outcomes.

I declare 2010 to be the Year of the EmPatient! Empowered, participatory — finding far better outcomes than we ever could by depending on Congress or someone else to — maybe — help us out.

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Forwarded to me by a dear friend (thanks Dot!)… so I share it with you. Wish I could attribute it, but I have no idea where it came from. If you know, let me know, too. Credit where credit is due.

The American Medical Association Weighs in on Healthcare Reform

The Allergists voted to scratch it, but the Dermatologists advised
not to make any rash moves.

The Gastroenteritis had sort of a gut feeling about it,
but the Neurologists thought the Administration had a lot of
nerve.

The Obstetricians felt they were all laboring under a misconception.

Ophthalmologist considered the idea shortsighted.

Pathologists yelled, “Over my dead body!” while the Pediatricians
said, ‘Oh, Grow up!’

The Psychiatrists thought the whole idea was madness, while
the Radiologists could see right through it.

Surgeons decided to wash their hands of the whole thing.

The Internists thought it was a bitter pill to swallow, and the
Plastic Surgeons said, “This puts a whole new face on the matter.”

The Podiatrists thought it was a step forward, but the Urologists
were pissed off at the whole idea.

The Anesthesiologists thought the whole idea was a gas, and
the Cardiologists didn’t have the heart to say no.

In the end, the Proctologists won out, leaving the entire decision
up to the *ssholes in Washington.

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Do you have concerns about healthcare reform?  Have a rumor or concern you want clarified?  Pose it here and we’ll try to uncover the truth.

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Lives First
(Then Money)

or

Money First
(Then Lives)

“Lives First” people understand that lives are more important than money.  Not that money isn’t also important.  It’s just that they believe that aspects such as no insurance denials for pre-existing conditions, or making sure rewards are in place for innovation, or assuring access for everyone (everyone must participate) or making sure there is focus on health outcomes improvement — are more important than how reform will initially be paid for.

“Money First” people understand that controlling costs and reining in spending are more important than worrying about who gets what kind of options for care or access.  They understand that yes, people die or get sicker (and more expensive) when they don’t have access, but that denying access to some means others can get better care. They tell the Lives First people that if money isn’t the first consideration, then it will mean rationing for all, as if that is something new. (A bogus argument, by the way, because rationing is already a part of our care.)

Some generalizations, although I realize there are exceptions:

The Lives First people are often people who have had their access challenged due to cost (or they have watched a friend or loved one who has desperately needed access and could not afford it.)  I’ve been there.  Although I had high deductible health insurance when I suffered my misdiagnosis, the co-pays were back breakers. I lost every penny I had in savings just trying to keep up — all for the privilege of proving the medical experts were wrong.

The Money First people are typically people who do have access, either because their employer subsidizes their health insurance or because they are already age 65 and older and have Medicare.  They see reform as something that will impinge on their income because it certainly won’t get in the way of THEIR access.  They don’t need to worry about other people’s lives.  They only need to worry about their money. (I have to wonder about the Medicare recipients who think money is more important – do they have this conversation with their children?)

Based on that description, which do you think I am?  There’s probably not much question in your mind — but this may surprise you: My husband and I have good healthcare coverage because he is retired from the Air Force and that gives us access to a government payment system for the rest of both our lives.  Healthcare reform will end up costing us more money than we pay now, there’s no doubt.  Based on my own generalizations, you might expect me to be a Money First person….

But of course, I am not.  I hear from too many of those people who don’t have access, who have bankrupted because of medical needs, who work up to four or five jobs just so they can buy into a high deductible, catastrophic plan, just like I had. They get sicker, or they lose a loved one, not because the care wasn’t available, but because they could not afford it, or because they were denied care since they had no insurance.

Don’t get me wrong.  I understand that money is an extremely important consideration in the debate. We need to be responsible about the money questions, and yes, I get the “don’t want to mortgage our children’s future” argument. I believe we need both points of view to hammer out the best approach.

But, if you are a Money First person, I ask you to consider that Lives First may be the more fiscally responsible approach.  If we build a new healthcare system that assures access, even if it’s quite expensive to begin with, then over the longer term, we will be “building” a healthier populous — one that won’t need as much of the same kind of expensive access we have today.  In the long run, the system will cost far less with healthier people who won’t have to go bankrupt just to get the care they need.

Ask yourself: What’s more important to you? And which profile is yours? I wonder if maybe you’ve even put yourself into the wrong category to begin with? Does this food for thought shift your thinking at all?

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Do you have concerns about healthcare reform?  Have a rumor or concern you want clarified?  Pose it here and we’ll try to uncover the truth.

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As predicted, the fearmongering, half truths and out-and-out lies about healthcare reform have begun in earnest.  I received an email from a dear and respected friend yesterday and was appalled at the dis-information it contained.

So I’ve decided to share the email with you and show you where it is wrong and why you need to question anything you hear in these kinds of emails, blog posts and other pieces you may read.

The email, called SENIOR DEATH WARRANTS is printed here in its entirety.  I’ve footnoted my responses below.

The actress Natasha Richardson died after falling skiing in Canada. It
took eight hours to drive her to a hospital. If Canada had our healthcare she might be alive today. In the United States, we have medical evacuation helicopters that would have gotten her to the hospital in 30 minutes. (untrue – see comment 1)

In England anyone over 59 cannot receive heart repairs or stents or bypass because it is not covered as being too expensive and not needed.  (untrue - see comment 2)

Obama wants to have a healthcare system just like Canada’s and England’s. (untrue - see comment 3)

I got this today and am sending it on. If Obama’s plans in other areas don’t scare you, this should! Please do not let Obama sign senior death warrants!!

Everybody that is on this mailing list is either a senior citizen, is
getting close or knows somebody that is.  (true!)

Most of you know by now that the Senate version (at least) of the “stimulus” Bill includes provisions for extensive rationing of health care for senior citizens. (untrue – see comment 4)

The author of this part of the bill, former senator and tax evader, Tom Daschle was credited today by Bloomberg (untrue - see comment 5) with the following statement:

Bloomberg: Daschle says “health-care reform will not be pain free. Seniors should be more accepting of the conditions that come with age instead of treating them.”
(untrue – see comment 6)

If this does not sufficiently raise your ire, just remember that our esteemed Senators and Congressmen have their own healthcare plan that is first dollar or very low co-pay which they are guaranteed the remainder of their lives and are not subject to this new law if it passes. (true!)

Please use the power of the Internet to get this message out. Talk it up at the grassroots level.

We have an election coming up in one year and nine months, and we have the ability to address and reverse the dangerous direction the Obama administration and it allies have begun and in the interim, we can make their lives miserable. Lets do this! (see comment 7)

Comment 1: Natasha Richardson fell and hit her head, and refused to be taken by ambulance to the hospital.  No one can be treated if they don’t seek treatment.  Yes, later her husband phoned for help, but by then it was too late.  Could they have taken her by helicopter for help if she had been in the US?  Maybe — but we will never know.  This form of condemnation of Canada’s healthcare system is purely speculation.  No matter what country anyone lives in, they won’t get care if they refuse help.  News articles indicate that helicopters are available for transport in many areas in Canada, but not remote areas.  That is true in the US, too.

Comment 2: I went straight to some doctors in the UK for this answer ( I network with many doctors in England on Twitter.)  They assure me that there is no such policy.  One even asked me “is that a serious question?”

Comment 3: I have scoured the Internet and can find no where where any bona fide news organization has reported that Mr. Obama has made any such statement.  There are blogs, comments and editorials on some news websites, but no hard news anywhere that reports this statement or any statement like it.

Comment 4: The stimulus bill has nothing to do with quality of care or delivery of care.  It does contain $57 billion for development of an electronic medical records system which will eventually cut the cost of care and will improve the safety and delivery of care.  Will rationing take place?  Of course it will.  It already does.  But that has nothing to do with the stimulus bill!

Comment 5: Bloomberg has never quoted Tom Dashle saying any such thing!  I checked in with one of my favorite resources, Politifact and they spell out exactly how this rumor came to be.

Comment 6: In fact, that quote came from Betsy McCaughey in the form of a letter to the editor.  And while I have admired Dr. McCaughey’s work in hospital acquired infections for many years, I believe she is WAY off base by making such a statement.  Inflaming an already contentious argument does not help. (Update: McCaughey is truly going off the deep end, now making statements that the healthcare reform will will make it mandatory for Medicare recipients to go through required counseling to tell them how to end their lives sooner.)

Comment 7: Healthcare reform is going to happen.  We can make it easier on ourselves by dealing in the truth, and helping the cause.  Or we can make it far more difficult on everyone by fearmongering and inflaming.  Sending an email full of half-truths, lies and speculation doesn’t help!  If you truly want to get involved at the grassroots level, then I ask you to instead contact your local congress person and share your feelings about what is important to you.

Read more about the Senior Death Warrant at my About.com blog.

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Do you have concerns about healthcare reform?  Have a rumor or concern you want clarified?  Pose it here and we’ll try to uncover the truth.

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Then along comes this video from Elizabeth Cohen at CNN.  In a matter of minutes, she was able to pull up one of her CNN colleague’s medical records, his kids’ records… She could see which doctors they’ve visited, what took place during those meetings…

HIPAA is supposed to protect us from others getting our medical records right?

We don’t want potential employers finding out we have to take meds to control blood pressure or cholesterol every day — it’s not their business!

And consider this scenario:  you have no health insurance, or maybe you’ve just been laid off and you’ve lost your insurance.  Now you need new insurance.  Well guess what?  Insurers are looking behind the scenes to find reasons to turn you down. Regardless of how easy it is for others to get your medical records, the Medical Information Bureau makes it easy for insurers anyway.

Here’s my opinion on this issue:  I absolutely believe our health records need to be online, both to improve our health and to save money.  Both are reason enough to do make medical records accessible digitally.

I do NOT believe patients should be putting their own health information online through Google or Microsoft Health Vault or any of the free applications out there, and I very much object to those large organizations (like the Mayo Clinic) which are getting in bed with these two privacy-sucking behemoths.  Those “free” applications are not free.  I’ve written about that extensively in the past.

I do believe patients can keep track of their own records, digitally, through any of the pay-for-service PHR (personal health record) programs.  You can read about the differences between the free and service fee PHR programs.

Now the government is looking at ways to move all our records online, and they are ready to throw $20 billion into the project.  I support that — with this caveat:  part of that money must make sure that our records can’t get into the wrong hands — including Elizabeth Cohen’s (Elizabeth, you know I love ya!) — because while Elizabeth is only showing us the potentials, not everyone has our best interests or good motives for doing so.

By the way, Elizabeth takes time in the video to tell us how to protect our records.  Take a look.  It will serve you well.

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You can’t imagine how much grief I’ve taken for that statement.  Especially when I point out that organizations like the Mayo Clinic and the Cleveland Clinic are actually partnering with the likes of Microsoft HealthVault to put patient’s personal medical records on the web. 

And I still say — NO!

Wait!  You say.  Isn’t that what our new Obama-led government wants us to do?  Electronic Medical Records are good for our health!  They are good for our economy!  They are good for our country!

Not so fast!

First — the distinction between those EHRs, electronic medical records that are kept by practitioners — doctors, hospitals, nursing homes.  They use proprietary programs that may allow access to patients, but are not set up for patients to add their own information.  These are the kinds of records being promoted by our new government, and I say — go for it.  Great idea.  They will save lives and grief.

But there is another kind of record known as a PHR, personal health record.  There are a dozen ways to keep records, including on your own home computer or on a thumb drive, or even in a shoebox. And, they can be kept online for those who are willing to fill out tons of forms and scan and upload some of their information.  Some programs exist that charge a monthly or annual fee.  Not expensive, but enough that you can at least trust your information with them (as well as it can be trusted anywhere — another conversation for another day.)

But some of those big online health groups like Google, Microsoft, Revolution Health and others want YOU to put your OWN information online.  and — lucky you!  They’ll give you the space online for free!

You know there’s no such thing as a free lunch.  And there’s no such thing as free space online for your health information.  And while I’ve said that for years, and while many have dissed me for doing so — the proof is now published.

The problem is that these companies want to sell your information to the highest bidder.  Maybe they can sell it to a pharmaceutical company or a drug store chain. Maybe they’ll sell it to the Medical Information Bureau that will tell its member-insurers what your medical problems are (so they can decide not to insure you.) Or maybe your employer wants to know whether to keep you on staff, or even hire you to begin with?

Believe me, despite what they claim they “want” to do for those unsuspecting people who put their health information online — their real goal — the goal they MUST have (by law because they are beholden to investors) — is to make money.  They are not offering you that space out of the goodness of their hearts.

And now, it turns out that not only do they want to sell our information, Google hopes to get a piece of the federal money pie being set aside for electronic health records, too?

I’ve said it before.  I’ll say it again.  If you want your health and medical information to stay private, then STAY AWAY FROM THE FREE PERSONAL HEALTH RECORD applications.  It can’t be any plainer than that.

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That was… until I actually went to Change.gov and read about how these “Healthcare Community Discussions” were deemed to take place.

And now? I’m not sure that’s his intent at all.

Read what I have to say about it all.

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This recent article penned (or keyboarded?) by Ms. Brownlee is no exception.  5 Myths on Our Sick Health Care System – I invite you to take a look.

Among the five myths, here are the points that were new to me, or provided me with a new perspective:

1.  Myth:  someone else is paying for your healthcare.
I know this — and you do, too — but we haven’t thought about it this way.  Ms. Brownlee is referring to the fact that we have employer-based health insurance.  We make the leap, then, that our employers are providing us with coverage.  BUT — in fact — if your employer didn’t pay for a portion of your coverage, then that money would be paid directly to you — and YOU would write the check.

2.  Myth: Administrative costs drive up the cost of care.
The administrative costs of private insurance — often suggested to be at the heart of healthcare that is too expensive — would not save as much money as we may think.  Ms. Brownlee suggests that simply cutting out that cost would not even pay to cover the uninsured.  I have to respectfully suggest that while cutting those costs may not be ONE problem with costs, reducing them would be a good start.  Overinflated salaries of those who are in a position to deny its customers care is a lot like the CEOS of car companies taking private planes to Washington.  It is representative of the dysfunction, if not the core of it.  (And yes, I do get her point that there are valuable services performed by the insurance companies — and I agree — but that doesn’t mean the ranks aren’t bloated and too expensive.)

3.  More reform is cheaper. (This is not a myth — it’s a premise.)
This one is full of information I didn’t know.  And Ms. Brownlee suggests that Senator Wyden’s healthcare reform proposal may be the way to go.  You’ll want to take a look.

I know most of my readers are more interested in specific tools for improving their own care.  But sometimes a grasp of the bigger picture helps us prepare for what’s in our future.  Take a look at these 5 myths — see if you agree, or what questions you might have.

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We all think we know what healthcare reform means — we think it means something about universal healthcare, right?

You might be surprised to learn that “universal healthcare” isn’t what it’s about at all.  It’s about shifting who gets healthcare, figuring out how to pay for it, and knowing that any success we find will be based on how we ration care.

Huh?

Yes — you read that right.

Universal healthcare — it’s terminology used to confuse, actually.  Most people think it means we would move to a single payer system, but that’s not what it means at all.  Read more about what universal healthcare means here.

Rationing?  Yes — our care is rationed now.  Sometimes we are the ones who ration it for ourselves, and sometimes our insurers or the government rations for us.  You need to understand it if you really want to ‘get’ reform — because the more reform, the more rationing.

Questions?  Let me know — because your questions are what helps me write material to provide answers.  blog – at – epadvocate.com

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