Patient Empowerment

... a great quote (not my words!) from empowered patient Hugo Campos....

Here's the story behind that headline, a story we are beginning to hear more frequently, and which may even feel familiar to you.  A travesty, really.

Hugo Campos, who lives in Oakland, California, is a highly engaged heart patient.  Hugo has a defibrillator implanted near his heart to keep his heart pumping even when it thinks it would like to stop. That defibrillator constantly pumps out data which indicates how well it's working, how often it must kick start his heart, and more.

Shortly after it was implanted, Hugo asked to see the data; afterall - it's HIS heart, HIS defibrillator, and they are HIS medical records, right?

Wrong. The doctors and the defibrillator's manufacturer are the only ones who can access Hugo's data.  And that makes him mad.  (It would make me mad, too.)

There's no doubt Hugo could make a stink about it;  in fact, at times, he has.  We know he has a right to his medical records, and we have to wonder, how can he be denied access this data?

But that's not what this post is about.  The post is about the fact that Hugo, in pushing the subject, may be labeled as "difficult" by providers.  With that label, his relationship with his doctor becomes strained.  Ultimately he may find himself with no doctor. Or perhaps he'll find himself getting substandard care from the doctor who has labeled him as difficult.

Previously we've addressed the idea that there are times when doctors just don't want to deal with us - and some of those reasons, quite honestly, are fair.

But this new spin on the concept of "difficult patient" is actually quite frightening. More and more we patients are being encouraged by friends, family and the media (including right here at the Patient Empowerment site) to advocate for ourselves, to share in our own medical decision-making.  But it seems that to some doctors, just doing what makes sense might get us labeled as difficult - and we will be unable to get the care we need.

Yes, quite frightening. Highly unethical. Anti-Hippocratic oath at the least.  But then, those doctors who commit this sin of providing no treatment or substandard treatment to their patients - they don't really care.  They're just looking for a paycheck.  Their patients' outcomes are so secondary to their personal concerns. Follow the money, after all.

For that growing number of doctors, our only choice may be, as Hugo noted, to "Consent, comply and basically shut up".

We patients must protect ourselves from these unethical providers.

It's a fine line, and we do have options, although those options may require quite a bit of finesse - not easy when you're sick or hurt.  But as the pressure mounts for providers to provide more while being reimbursed less, requiring us patients to take a far bigger role in our own care, it pays to understand the problem, to avoid crossing the line - or to find another doctor when the going gets too tough.

Make yourself familiar with the problem and what to do about it:

•  Doctors Complain About Patients' Behavior

•  Doctors Reject Difficult Patients, Denying Them the Medical Care They Need

•  Have You Been Blacklisted, Blackballed or Denied Medical Care?

•  How to Repair Your Relationship With Your Doctor

And - if your care has been affected negatively - please share your story along with lessons others can learn from it.

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A few days ago I told you about the new sunscreen labeling requirements the FDA is imposing on sunscreen manufacturers - requirements that were supposed to go into effect in just a few weeks (June 2012.)

Those rules were provided to sunscreen manufacturers in mid-2011.  But now manufacturers are threatening sunscreen shortages in 2012 because, according to their industry spokesperson, they haven't had time to implement the new testing and labels.  If they can't meet the labeling requirements, they might have to stop selling their products until they do.

The conundrum: offer the public sunscreen with deceptive labeling that offers at least some protection?  Or provide no sunscreen at all?

So the FDA has postponed the required implementation of the new sunscreen labeling rules until December 2012.  (Some smaller manufacturers have until December 2013.)

What does that mean to us sunscreen consumers?

It means we can't trust what we read on sunscreen labels. It means that when we see "sunblock" or "waterproof" - they aren't. And when we read "broad spectrum" - they might not be.

And then there's SPF - which will probably be correct, but which most of us draw the wrong conclusions about.

Here's more (updated) information about what you can, or can't believe about today's sunscreen labels, what the changes effective December 2012 will be.

As best you can before December, stay sun safe - and enjoy your upcoming summer.

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(Update!  The FDA has delayed implementation requirements for the new sunscreen labels - read more.)

Today we'll put on our consumer hats...  Since I'm NOT a fan of using the term "consumer" to describe patients, you know I'm out of my comfort zone just using it....

But I learned recently that the FDA had decided to force testing, requirements and new labeling for sunscreen.  Why?  Because - surprise!  What the labels on sunscreen said, and the truth, were two different things.

(Why am I not surprised?)

So as I studied more about what the changes were, and what had instigated the FDA to create its new stringent, testing-based requirements, I also ended up learning all kinds of things about sun exposure and sunscreen that I had never understood before.

In a few cases what I thought I knew - was wrong.  For example:

• I always thought that SPF was a measure of how well I would be protected from skin cancer.  Wrong.
• I always thought that SPF-30 provided twice the protection as SPF-15.  Wrong.

And the list goes on.

You may have some real misconceptions about sunscreen, too.  Further, you will want to know what is different in the new labels now, and why.  For example - why is it you can no longer buy waterproof or sweatproof sunscreen?  (Because neither one ever existed to begin with - even though the labels said they were waterproof or sweatproof.)

•  Learn more about Sun Exposure and Your Health

•  Learn more about The New 2012 FDA Labeling Rules for Sunscreen

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It does my heart good to hear from a handful of you asking where your newsletter is today!

Using a bit of alchemy and great skill (meaning, I sent an email request to my About.com support team) - we have now moved the Tuesday Patient Empowerment newsletter to Thursday....

Why did we move it?  It's always been issued on Tuesday because that was convenient for me - that was the only reason. It meant I would put it all together on Monday, and send it up the pipeline so it would be issued around 9am on Tuesday morning, and then I didn't have to think about it until a week later.

The problem is, many of the big announcements in healthcare - anything from major medical study results, to healthcare reform, to politics - are issued on Tuesdays and Wednesdays.  That meant that I could write about them - but unless you were camping on this patient empowerment site, you wouldn't know about it until almost  a week later when the newsletter came out on Tuesday.

Therefore - beginning this week - the newsletter will be issued Thursdays starting at 1PM eastern/10am pacific...  in hopes we can keep up with those major announcements as they come down the pike.

So if you were one of those who wondered - I thank you for wondering - and hope that you'll find Thursdays to suit your purposes even better, knowing that in some cases, you'll be kept up to date in a much more timely manner.

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You wake up in the morning, your throat is sore, your sinuses are pounding.... Unfortunately, you MUST go to work today (big meeting, and you're the star) and don't have time to get to the doctor, nor can you afford the luxury of staying home....

So you open up your laptop, log on to the quick service doctor, and using either Instant Messaging or Skype, explain about your throat and your head.  The doctor asks you which pharmacy to send your prescription to, and on your way to work, you drop by and pick up an antibiotic, arriving only five minutes late to work.

As the Church Lady would say, "How con-veeeen-yent!"

And it is, no question about it. Telemedicine, the ability to be diagnosed and treated electronically, can be convenient and economical - both a time AND money saver. That quick call to a doctor might cost you $10 - far less than a co-pay.  Plus, who can get in to see a doctor within a matter of minutes or hours these days anyway?

Of course, like anything - if it sounds too good to be true, it just might be that.  So as empowered patients, as long as we are aware of the potential problems, we can make wise choices about such quick and easy access.

First - there's a big difference between talking to your OWN doctor, talking to a doctor who is in touch with your doctor, and talking to a stranger doctor. If your own doctor, someone who knows you and can access your records, is available online - then you're probably going to be safe in making the connection that way. (With a few other thoughts below.)

Second - insurance companies are beginning to offer this kind of service and that's a sort-of mixed blessing.  Never forget that your insurer is trying to save money for itself BEFORE it's trying to help you.  That's key.  So, if your insurer allows you to connect with your own doctor or (like above) at least a doctor who has access to your records - then you might be safe in making that connection. Just remember the money thing.

Third - never - EVER - try to work online with a doctor you don't know who is not related to your care in some way to begin with. There are any number of services out there claiming to answer your personal medical questions....  as long as you've shared your credit card number first.  Learn more about accessing random "ask a doctor" websites.

A few caveats and extra thoughts:

I chose this topic today based on this article in USA Today which tells the story of a woman in Texas who used her online doctor's services just the way I described above. What really makes me nervous is that he prescribed an antibiotic without knowing if she had an infection (at least that's how it appears in the story - that may be an incorrect conclusion.)  Here's the problem - one of the reasons we are having so much trouble with superbugs - those bacteria that are killing patients because they don't respond to antibiotics - is because antibiotics have been prescribed way too liberally for decades.  If the woman had seen her doctor in person, I have to think a better assessment would have been done of whether or not she really had an infection.

A cold or a sinus infection is one thing - but strange, never-before-experienced symptoms are another.  I would recommend you never count on an online doctor, whether you know her or not, to assess a new set of symptoms for you.  That requires an in-person, hands on assessment.

Telemedicine is very much a wave of the future, and I mostly welcome it.  But like anything, we just have to be wise about how we use it.

We will be pushed by our payers into using the less expensive, less personal forms of care because they save big money.  As smart patients, we can't afford to be swayed by the convenience when our health - and our lives - may be at stake.

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Hospitals don't want you to have your medical records.

In fact, they are so fearful of you seeing your records that they have, through the American Hospital Association, sent a formal letter to the government asking that barriers be put in your way.

A bit of history: Several years ago, the government set aside billions of dollars to help support medical providers as they made the shift from paper records to electronic records (which also go by a number of acronyms like EHRs, EMRs). The new systems were to be put into place, then, when they could demonstrate certain benchmarks (called Meaningful Use) they would receive reimbursement from the government for the expense of implementation.

The government's goal was to bring American health records into the 1990s (never mind that it was already 2009!) The United States is probably the only civilized country in the world that still, in 2012, mostly depends on paper records.

Among the "Round 1" Meaningful Use benchmarks providers needed to demonstrate was creating an interface so patients could get ahold of their own records, through the internet, securely and privately. For hospitals, that access needed to be provided within four days of a patient's discharge.

It's time for round 2 - a new set of Meaningful Use benchmarks, now being developed by the government - new rules for reimbursement. Patients have asked for quicker access, so that our records are available to us either immediately or within 24 hours. After all, they are OUR records (or our loved ones'.) We want to know what took place, with whom, and how. Especially if problems arise post discharge, we want to be able to figure out where the problems came from.

But the American Hospital Association is fighting that request. In fact, they have petitioned the government to be able to delay patient access for 30 days!

To put this in perspective, it would be like packing for a long trip, checking your luggage at the airport, flying to your destination, but once you arrive, the airline has permission to hold on to your luggage for 30 days.

The big difference? Well - the airline doesn't want to hold on to your luggage, because that's just a hassle for them.

However, we don't have to wonder why hospitals wants to block access to our records. Follow the money!  They have track records to prove some of their reasons:

One reason is because they need to go through the records to be sure any incriminating evidence of the cause of a patient's infection, or any of the never events, have been as hidden as possible. Yes, as nefarious as that sounds, it happens every day. Just ask actor Alicia Cole, or any of the other of dozens (hundreds?) of patients who have written to me when they have finally gotten copies of their medical records from a hospital stay, only to discover many differences between what is reported, and their own knowledge of what happened to them while they were there.

The second reason is because they need time to upcode and balance bill. You may have received some sort of care that can be billed at, say, $1000, but by adding one adjective, or changing a number, they can charge a lot more - and be paid a lot more. Anything can be "edited" to make them more money - from your blood pressure to the number of kleenex boxes put in your room.

Which all means that if your records are delivered to you as soon as you are discharged from the hospital, they don't have time to change them! I have no doubt that hospitals, in general, will deny they do these things. Yet everyday reports tell a different story. I suspect they would also give us different reasons why they think they should be able to deny us access to our records. But none of them, from our patient point of view, can be good enough.

A few requests for you, as an empowered patient:

First, you can share your two cents directly with the government, right here, online. We have only until May 7th to do so, but you can sign in and say what you'd like to say about making sure patients can gain access to their hospital records right away.

Second, you can share your story in the comments below - your experiences and why you think the new Meaningful Use rules should give you quicker access, not slower access to your records.

You may also want to see what our friend Regina Holliday, whose husband died shortly after she was denied access to his records, has to say about this attempt from the AHA, what Christine Bechtel from the Partnership for Women and Families proposes, and what Jane Sarasohn-Kahn from Health Populi has to say in her blog for health IT professionals.

The patient's voice - YOUR voice - is so important at a time like this. Please use it!

Update! Regina Holliday is reaching out to anyone who will be in the Washington, DC area on Sunday, May 6th, to march in front of the hotel where the AHA will be holding its annual meeting, in support of patients' immediate access to their hospital records.  Learn more, and get details, at Regina's blog.

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My friend Kathy contracted shingles last Fall.  She is still suffering.  Her biggest regret, she tells me, is that she didn't listen to her doctor when he told her last spring to get the shingles vaccine. Because her insurance didn't cover it, she didn't follow through.

Kathy is just miserable. She has shingles on many parts of her body, in her hair, and on her eyelid, swelling it almost closed.  Sometimes the pain seems to fade a little, but then she gets new flares of it.  She just can't get rid of it.

"I couldn't believe I got shingles," she told me.  "I mean - I had chicken pox when I was a kid.... I thought that meant I couldn't get shingles!"

But it turns out, that's the opposite of the truth.  Shingles (Latin name: Herpes Zoster) attacks people who DID have chicken pox during childhood. So, if you had chicken pox, then you could end up being one of the one in three Americans who contracts shingles as an adult.

And it's a miserable condition to suffer through. According to the Mayo Clinic, the first symptom is pain, followed a few days later (for most but not all patients) by the rash.  It may last just a few weeks, or it can last (as it has for Kathy) for months.

One of the biggest problems is getting it near an eye, which can result in loss of vision.  That's Kathy's biggest fear, of course.

Recently we've been seeing commercials on TV for Zostavax, the shingles vaccine.  The vaccine has been around for awhile, and has been found to be safe, causing only a bit of redness and some achiness in the arm from the actual shot.  Kathy tells me she'd give anything to have put up with only a couple days of a sore arm not to have shingles.

I'm not a huge fan of TV commercials for drugs or other medical substances.  In fact, I'm quite vocal about getting rid of them!  But I AM a fan of vaccines for preventing diseases that can be prevented.  Shingles is one of them, and unlike vaccines like the flu vaccine, the shingles vaccine is specific and doesn't change from year to year.

And - a big change for 2012 - is that the shingles vaccine IS covered for those who have Medicare Part D for prescription coverage, and possibly Part B for those who don't have Part D (check with your primary care doctor.)  I know my TriCare coverage will pay for my shingles vaccine.  You will want to check your insurance to be sure it covers you for the vaccine.  But even if it doesn't, you should discuss the possibility with your doctor if you are over the age of 50, especially if you are over age 60.

I'll be getting the shingles vaccine in about three weeks.  I've seen my friend suffer. My mother suffered with shingles, too - although not nearly so badly as Kathy has.  I just don't want to even think about it.

What about you?

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Just back at my desk after several days in Washington, DC where I attended (and spoke!) at a patient safety conference which both astounded and delighted me - and gives me hope that progress is being made, even if it's ever so slight.

Among the VIPs were many highly respected attendees and speakers were some names you might recognize.

•  Capt. "Sully" Sullenberger, the captain of the plane that safely landed in the Hudson River in 2009,  described the 208 seconds from when he realized his jet had lost an engine until the flight came to rest in the Hudson... riveting.  He was there to show us how airline safety lessons can be applied to healthcare, too.

•  Farzhad Mostashari, MD, the National Coordinator for the nationwide implementation of electronic health records spoke about "meaningful use," including the need to be sure patients have access to their own records to help them in decision-making and their own safety, too.

•  And Nancy Conrad, wife of astronaut Pete Conrad. A space flight hero, Pete flew four space missions and was the third person to walk on the moon. While the official notices of his death say he succumbed to injuries from that motorcycle accident, it turns out he died due to a medical error in the hospital. Since then, Nancy has been working with patient safety leaders to try to affect changes in how safety issues are reported, and how safety steps can be better implemented in hospitals.

Hearing Nancy's story, and seeing the strides she has made to promote patient safety, and further rubbing elbows with some of my co-patient-safety-colleagues, reminded me of the fact that we all have that possibility in front of us - the possibility that we can take our very negative experiences and turn them into something very good for others.

I call it Proactive Survivorship.  It's the concept that says that once you've had a horrible, negative experience, you can dwell on it, and suffer from it.  Or you can turn it around into something that will help others - perhaps preventing them from suffering in the same ways you did, or fixing a wrong that exists in the system.

I've written before about some of these folks, several of whom were in attendance last week:  In addition to Nancy was Regina Holliday, whose husband died after a number of horrible experiences.  Now Regina tells her story in a variety of venues and even more impressive, Regina paints her impressions of safety conversations.  Karen Curtiss founded Campaign Zero, has written a book for patients and caregivers, and speaks on issues relating to infection safety.  Tiffany Peterson survived years of attempts at getting diagnosed, and still has trouble working with her providers sometimes. But Tiffany blogs and tweets to help fellow Lupus patients.

And me - yes - I am a proactive survivor.  Had I not suffered my own medical mistake (being misdiagnosed with terminal lymphoma), I would not write and speak to help patients today.

Who do YOU know who has turned their negative experience into something good for others? Maybe it's YOU. Or maybe it's someone you know or care about. Or maybe it's a stranger whose proactive survivorship you admire...

Maybe that person has started a non-profit organization.  Or maybe he or she simply phoned someone who needed support.  Turning bad into good doesn't have to be done on a large, grand scale. The biggest steps AND the smallest, help other people.

So - here's an official invitation to you to share a story of a proactive survivor - you (yourself!), a friend, a loved one, or simply someone you admire.

Share your story of turning healthcare lemons into lemonade to encourage us all to help others which, in turn, helps us even more.

(Comments are welcome - but stories should not be shared in the comments section.  Please share your stories so they won't disappear like blog comments do!)

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That word is a mouthful:

DIS-auto-NO-mee-ya

I had never even heard the word until about 10 days ago when it was described to me by Dr. Rich Fogoros, our About.com Guide to Heart Disease.  (Now - don't go running because you think this post relates to heart disease - it doesn't!  Hang in there with me...)

I had actually just completed my new articles about Lyme Disease, and as many of you know, anytime we Guides cover medical topics, they get reviewed by medical people - like Dr. Rich.  He was asked to review the Lyme articles and felt that some of the information I'd written about "chronic Lyme" wasn't entirely kosher.

(It has since been corrected, and does relate to this piece - so hang in there with me a bit longer....)

It was at that point he described dysautonomia to me.  I was fascinated.

As a disease / syndrome / disorder it's a tough one.  But as an ANSWER, it's a V-8 moment! (Yes, picture me slapping the palm of my hand against my forehead!)

Here's why:

The causes and symptoms are described to me on a very regular basis by people who tell me they cannot get a diagnosis, and they have heard a half-dozen times from doctors that there is nothing wrong with them, and that their problem is all in their head.

They are described to me by people who are ultimately diagnosed with chronic fatigue, or fibromylgia, or IBS - or any of a number of other disorders or syndromes that might be diagnosed, but don't seem to have a real CAUSE.

Yet (except for one form of genetic dysautonomia, called Riley-Day Syndrome) there does seem to be a cause - some sort of trauma.  It might be trauma in the classic sense (from a bad accident to PTSD from a roadside bomb).  OR, it can be trauma from a virus gone crazy in one's body or even (you guessed it) an previous rampant infection, like from Lyme Disease.

So to me, based on what I've heard from hundreds of patients over the years, dysautonomia is an ANSWER.  It subtracts the "all in your head" and the "no known cause" - and helps patients and their doctors figure out what to do next.

If you are one of those patients, you owe it to yourself to learn more. Here are the basics about dysautonomia, aligned with known causes, symptoms and eventual diagnoses.  Included in the article are some great resources for follow up, too.  Included is a place on Dr. Rich's site where patients share their experiences. They might be interesting to you.

So thanks to Dr. Rich for opening our eyes.  And, I'll pass on YOUR thanks if you find something in here that helps you.  If you do, please let us know!

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WATCH THIS VIDEO BEFORE IT'S TAKEN DOWN!

How many of those emails have you received?  The ones with a link to a video that is either political in nature or in some way proves that "they" are out to get us....

In the same vein as all those email claims that are written by either:

• Conspiracy theorists who want you to believe the government is trying to take us over by insisting we be vaccinated with something that is going to kill us (whereupon I have to ask - if that's so, then how will "the government" get paid when all the taxpayers have died?)
• Conservatives, including Super PACs, who issue frightening email claims to rally the masses to tell lies about healthcare reform or political candidates.  (And yes - they are all written and sent by conservatives.  In the 20+ years I have had an email inbox (yes, since 1989) - I have yet to receive a claim in my email written by a liberal making false claims about a Republican or Conservative stand or politician.)

You know you've received them in your email too!  (And let me remind you before I continue - that I am a registered Republican, and on many issues, I shamefully admit that I am considered to be on the same "side" as those who would scam us.)

Many of these emails and links are health-related - from the Muslim practice of Dhimmitude which will preclude Mulsims from having to buy health insurance (not true), to the diseased green monkeys that are used to develop vaccines (also not true), to Senior Death Warrants (not even close) and more - they are scams and hoaxes and are put together to scare you away from getting good  medical care, or to get you to  decide against specific non-conservative policies, or  to encourage you to vote for a Republican.

And you know what?  For too many of you they work!  And worse - you pass them on! I don't say that to cast dispersions on anyone. You can read here why it happens, why you are so willing to believe what you read, and why it's important to vet the information before you send it to someone else.

Now - this is important.  Sometimes good, informative material does cross my desk. And once I double check to be sure it is true, I do learn quite a bit.  The problem is - there will be only one of those for every 50 that are just outrageous.  Further, most of them have some little modicum of truth to them - which too many people take to mean the entire set of claims is true and correct.  That's just not so.  The entire piece needs to be reviewed before you send it to someone else.

So I have some new and updated tools for you - to help you review any of these links and videos that are sent to you, so you can make a wiser decision about their veracity:

1. I have updated the list of resources you can use to do an objective review.

2. I have started a list of those emails and links so that when we do review them, they will be easy for you to find.  Some of these claims will curl your toenails. In other cases you'll find people who have lied about their credentials telling you things that aren't true.

3.  There is a place here at About.com Patient Empowerment where we are collecting the outrageous claims you find and either supporting their truth, or debunking their lies. You can make your contribution here.

In particular this year, as the election cycle picks up steam, and as those Super PACs continue to send out their lies and hoaxes - you owe it to yourself to stay on top of the truth before you share bogus information, too.

Because, I swear, it won't be Obamacare that kills Granny. It will be the heart attacks that result from the lies and vitriol that were fabricated by those who stand to lose money if healthcare reform continues to be implemented and if the president is re-elected .... the same lies and vitriol being shared by people who don't know they are being fooled.

P.S. I'm a Granny. And I have no fear (although yes, some concerns) about ObamaCare.

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