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Archive for August, 2007

Study the Studies: Too Good to Be True?

My mom turned 80 years old on Wednesday. She lives 1500 miles away in an Alzheimer’s Memory Center. We did the usual things; sent a card, flowers, phone calls…. and she sounded good on the phone, although she couldn’t have told you it was her birthday, or who we were on the other end of the phone. I love to hear her sounding happy. It breaks my heart that she is so disconnected. I love that my dad keeps her so busy and as happy as she can be under the circumstances.

My mother is the second person in our family to have contracted Alzheimer’s disease. Her mother, my grandmother, had it, too — although we didn’t call it such in those days. Gramma had “hardening of the arteries.” Same thing, different generation. Did previous ancestors have it too? We don’t know.

That explains to you, though, why my sisters and I are highly attentive to any news that comes down the pike regarding Alzheimer’s disease. There must be genetic tendencies. We figure there’s a good chance we’re next in line. You can imagine how we peruse the headlines — we’re looking for any and every helpful tidbit, or any hopeful research results. No silver bullets have come along. But we do get promising news on occasion.

Unlike my sisters, I also pay very close attention to any of the news regarding hormone replacement therapy (HRT), and how it relates to anything at all. In 1993, I had a total hysterectomy and immediately began taking estrogen-only HRT. In these 15 years, if one was to create a chart of the good news, bad news about HRT, it would look like shark’s teeth — up and down, pointed lines – to HRT or not to HRT? And if I had only ever read the headlines — worse yet — if I had actually believed the headlines by themselves were always accurate, then I would have been on and off that HRT a dozen times in the interim.

And that brings us to the reason for today’s blog post — an article in Time Magazine called “Study: Estrogen May Fight Dementia.” Reading the headline, my heart skipped a beat! I take estrogen! Maybe it has turned out to be my silver bullet! Maybe I won’t get Alzheimers!

But therein lies the problem. It’s so easy to quickly read a headline like that, then jump to all kinds of conclusions. And that happens to all of us every day. No matter what your health concern, past present or future — a quick headline can arouse curiosity or — worse — can satisfy by itself.

Over the years, I’ve had that heart-skipping experience (both good and bad) a dozen times. I’ve watched the news — and I’ve learned to read not just the article from which the headlines derive, but I’ve then looked behind those headlines, sometimes reading the actual studies that created the news.

The big deal about this particular study is that one of the groups studied was comprised of women just like me. I actually fit the profile: age, total hysterectomy, estrogen-only HRT, dosage — almost exactly…..

But then, as happens so often…. once I read the article, I came back down to earth. It turns out that I may have been taking HRT for too many years. Or maybe not. Or it may be better news for women who kept their ovaries and didn’t have surgery at all — natural estrogen. Or maybe not.

… and the bottom line? As often happens, further studies are needed.

Here’s today’s advice: don’t ever be satisfied by reading a headline. The whole point behind a headline is to suck you in…. not give you answers. As a result, it’s very easy to get exactly the wrong impression of the underlying story and frankly, that can be dangerous at times.

If a health headline grabs your attention, look further. Were the people studied the same as you? Gender, age, family history, health challenge, treatments, even geographic location — they can all affect outcomes, and the relevance of the headline and study to you.

If you do decide the headline and story fit you, and if the results are of interest, then trace back to find the study which sparked the article. The article will tell you what journal reported the findings, or what scientist or doctor conducted the study. Just google the clues to trace back to the original, then read the original to make sure the people in the study truly represent you.

And if they do, and if you think the findings will change anything about your treatment or diagnosis, then make copies and take them to your doctor for review. Most often, your doctor will be aware of the new findings; but if not, you’ll be helping not just yourself, but other patients who fit your profile, too.

……. UPDATE !!……..

Some homework for you — get some practice reading behind the headlines …. submitted by Dr. Rich Fogoros, About.com’s resident heart guru, and healthcare system fixer, too …..

This headline came in this week, too, about statin drugs and their relationship to Alzheimer’s. Statin drugs are those that help lower your cholesterol. Give this one a look-see — and see if it applies to you:

Statin Drugs May Decrease Risk of Alzheimer’s Disease

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Monster, Marshalls, Others Prove No Privacy

Your no-brainer quiz for today: What do Monster.com, Visa, Marshalls and TJMax, Oklahoma Law Enforcement, Spotsylvania County, PA, and at least 500 other entities have in common?

They have lost electronic information to hackers, scammers and phishers in the past three years.

And there’s a good chance some of YOUR personal information was among the records they lost.

Think about it: your credit card numbers, your social security number, your bank account information…. somebody else has it now because these entities couldn’t keep track of it.

So why do I write about this today?

News in many newspapers and across the internet tells about the latest big loss — Monster.com which acknowledged losses earlier this month. Read about it in Forbes.

And it brings to mind an email conversation with my new internet privacy guru, Bob Hedin, who warns in a very pointed way that there is no such thing as secure information. Period.

And how is this important to patients?

Because every large internet entity out there is trying to get YOU to manage your health at its website. They want you to keep EMRs, Electronic Medical Records. The idea is that you and your doctor (eventually) will be able to keep your health records online. Everything from your family history, to your doctor visits, medical test results, x-rays and CT scans, shot records, the drugs you take — everything. How convenient it will be to have access to them from anywhere in the world!

Even the New York Times weighs in.

Sounds great, right? Easy access?

Not so fast! There are HUGE privacy and security problems here… because despite anything they may claim about keeping your information private, it just plain cannot be done. Period.

Who are these large internet players? Here’s a starting list. It will grow, I’m sure:

  • MSN
  • Google
  • WebMD
  • Revolution Health
  • …. to name a few.

Why do you think they are interested? Out of the kindness of their hearts? Not a chance. When you realize that in order to provide this service to you it will cost them out of their pockets for the storage space and administration…. they aren’t going to provide it for free. Nor do they want to.

Nope. Instead, they will use it for advertising! So when you pull up your records, and recorded there is the fact that you have arthritis, which ads will you see in your “free’ medical record? Drugs for arthritis, of course! And how do THEY know you have arthritis? Yes. Because their ‘bots have “read” your records. And if their ‘bots can do it, so can anyone else.

And who’s to say they won’t sell your information, too? Pharmacies do it — every day they sell lists of the people who buy their drugs to the manufacturers and others who want the information. So why shouldn’t internet companies do the same?

Honestly. Some people just won’t care how private their records are. Well, that is, until they get turned down for something important to them — like a new job, or life insurance, or even health insurance — eventually a home loan because they were diagnosed with breast cancer a few years ago, or even a car loan because they were treated after someone else hit THEM last year. And the only way to get much of that info is to gain access to health records that have been kept online.

Sounds kind of Big Brotherish, doesn’t it? Not to mention a motherlode for MSN, Google, and the others?

Now — I’ve blogged before about the importance of keeping one’s records. And I even think there is a great halfway point. Keep track of your own records electronically on a travel drive (thumb drive, jump drive — one of the little ones you can attach to your keychain.) Then, at least, you can keep them with you wherever — and even if you lose it, it will be backed up on your hard drive on your computer at home (which, of course, you have security software installed). And if someone finds the travel drive, what will they do with it anyway?

OK. It’s not a perfect system — but it’s better than putting all your information out there with one of the internet giants to be sold to the highest bidder.

Want to read more? Here are a few previous posts:

Pay Cash for your Healthcare

Medical Family History: Get it Down Before They’re Gone

Steve Case’s Revolution Raises Privacy Questions

And as for Monster.com? I’d be sweating bullets right now if my boss didn’t know I had my resume online, looking for a new job.

Hate it when those security breaches happen.

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Of Melanoma, Botox and Rocket Science

See if this doesn’t leave you shaking your head…. a story in the New York Times about access to dermatologists:

  • If you have a mole, and suspect skin cancer, you’ll have to wait an average of 26 days to get an appointment with a dermatologist.
  • If you want a botox injection to eradicate your wrinkles, that same dermatologist will see you within 8 days.

How did they arrive at those numbers? Researchers posed as patients and called every board-certified dermatologist in eight major cities across the US, and requested appointments. That’s how.

Oh, by the way. The dermatologists make $400 to $600 per botox injection — paid directly from the patient’s pocket. They make $50 to $75 in reimbursements for taking a look at a mole. And that’s pretty much wiped out by the paychecks they have to cough up for the staff that has to do the billing work.

What’s wrong with this picture?

Now see if this makes you roll your eyes: Dr. Jack S. Resneck Jr., the lead author of the study and an assistant dermatology professor at the medical school of the University of California, San Francisco provided this summary, “We need to look further and figure out what is leading to shorter wait times for cosmetic patients.”

Gee, Dr. Resneck. I don’t think you have to look too far. Why not consult a few of those rocket science colleagues you have and ask them? Maybe it has something to do with the differences in how much money the dermatologist can make?

This might surprise you — I honestly don’t blame the dermatologists. Not one bit. Don’t forget — they are business people first. They have to pay the rent, keep the lights on, and pay their staffs (medical AND billing) — because if they don’t, then the wait time for getting a mole examined will be forever.

As patients, we should be appalled that our American healthcare system has been reduced to this.

And here’s a suggestion: Next time you have strange looking mole, call your dermatologist and ask for a botox appointment. Once you get there, you can tell them you’ve changed your mind.

A patient’s gotta do what a patient’s gotta do.

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Blink, Intuition, Gut Reaction: Spot On

I don’t write often on trusting one’s intuition for making health care decisions. I should do it more often. Here’s why:

A few years ago I read Malcolm Gladwell’s Blink — an analysis of how we use our unconscious, our intuition, and how accurate it turns out to be. At the time I remember feeling almost vindicated — which I’ll explain more about in a minute.

Cited in Blink was a German social psychologist, Dr. Gerd Gigerenzer, who has done studies on intuitive thinking on ordinary people like you and me. I found an article in this morning’s New York Times about a book Dr. Gigerenzer has now written called, Gut Feelings: The Intelligence of the Unconscious.

In his book, Dr. Gigerenzer offers a basis for gut feelings — those made-in-a-flash decisions or judgments we make based on…. what? Often we don’t know. Dr. Gigerenzer suggests gut instincts are based on cues in our environment, and our ability to subconciously recognize them comes from heuristics which are built in, evolutionary abilities in the human brain. In most situations, when people use their instincts, they are heeding these cues and ignoring other unnecessary information.

So what’s the question here?

We all experience instinct and intuitive feelings, but our society doesn’t seem to value them as decision-making tools. Dr. Gigerenzer cites Benjamin Franklin’s account of rational decisionmaking — weighing written lists of pros and cons as an example of that devaluation.

Personally, I think there are two other reasons. First — I think we are all too interested in covering our backsides. We live in a litigious society, one that needs paperwork and evidence to prove every decision is right. Robbed a bank? You can’t be convicted without the evidence, even if everyone “knows” you did it. Need a mortgage? The mortgage broker won’t give you a mortgage based on instinct; he’ll need all the paperwork to back him up. Think your golf has improved? You’ll have to pull all your scorecards together and make a chart to see if your handicap is lower than it used to be.

But more important than stockpiling evidence is the question of trusting our intuition. We may have those flashes of ideas, but do we trust them? It’s the question of trust that made me feel vindicated when I read Blink.

Like most of us, I grew up making those rational decisions that require lists of pros and cons. In particular, I remember trying to decide what college to go to. On paper, one of them seemed better than the other, but in my heart (or, based on intution) I wanted to to Bucknell University. I went with my gut instinct and the decision turned out to be the right one for me.

More important to this discussion however, was the way I used — then TRUSTED — my intuition when it came to my cancer diagnosis. I just KNEW the pathology reports were wrong. I just KNEW I didn’t have cancer. And I set out to prove it. And I was right.

Had I not trusted my intuition, I would have undergone chemo. One can only imagine what the fallout would have been from unnecessary chemo.

There is no downside to trusting one’s intuition about one’s health, as long as that intuition takes you in wise directions. For example, “knowing” that you don’t have enough information to make a decision will send you in the direction of researching further, getting a second opinion, asking relevant questions, or finding support from other patients. “Knowing” you are experiencing side effects that are dangerous, as opposed to accepting them because you think they are just part of taking that drug, will send you back to the doctor’s office to review whether you are taking the right drug, or taking it in the right dose.

The only time trusting your intuition about your health can be bad is if you mix it up with wishful thinking. “Knowing” you don’t need to see a doctor because that pain that’s shooting down your arm can’t possibly be a heart attack…. or “knowing” that your dizziness and drooping mouth can’t possibly be a stroke — that’s not trusting your intuition — that’s wishful thinking and it may cost you your life.

Trusting one’s intuition to get the best care possible is a real, bonafide, patient tool. Use it. Use it wisely. You’ll be healthier because of it.

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Health Consumer Power via the Internet

I read a story in my local paper yesterday entitled Internet gives angry consumers new power, which began with a story about a man named Sterling Bishop who was unhappy with the work Pep Boys had done on his car. Mr. Bishop made a video showcasing the shoddy work, put it out on You-Tube, and finally got Pep Boys’ attention. The point to the story was that the internet can be used as a tool to balance the vendor-consumer equation because it allows the “little guy” to take on the vendor-goliath in a very public way.

As I thought about it, I realized that is just what William LLoyd Sheely is doing. Mr. Sheely contacted me several weeks ago to make me aware of his blog about his mother’s death from cancer when, Mr. Sheely claims (and provides proof with scans of documents on his blog), nobody ever acknowledged that his mother had cancer.

Mr. Sheely’s blog is a rant against the doctors and facilities that treated his mother. And he names them all. There’s no question about who the offenders were. Doctor’s names. Hospitals names. Right there in black and white.

There are some real commonalities between Sterling Bishop and Lloyd Sheely. Except for one thing. And that’s the advice I’ll provide for you today.

Having a clear goal for your online complaint can make all the difference in outcomes. In the case of Sterling Bishop, he knew what his goal was — he wanted his car fixed correctly and he wanted Pep Boys to make it right. Before he went public on the internet, they had been unwilling to do so. Now, it seems, the car is fixed.

Mr. Sheely doesn’t have a clear goal, and as a result, he won’t receive the same satisfaction. Is his goal to put the doctors and hospital out of business? I hope not, because too many others who are being helped by those doctors and that hospital would be hurt. Is his goal to get them to acknowledge their errors? Even apologize? Perhaps. But I can’t find that request anywhere. Does he think he should be entitled to money? Or forgiveness of bills? In his heart, he probably hopes it will bring his mother back to life, but of course, that can’t happen.

I wrote to him and asked him what his goals were, but his reply to me wasn’t much clearer. Perhaps his blog is simply a catharsis. Hard to tell.

Again — that’s the point. If you feel like your health or that of a loved one has been wronged by a healthcare provider or facility in some way — by all means — complain! But be clear about your expectations of those you complain to. State your goals clearly so they know what it is you want them to do. They can’t read your mind, and you can’t expect them to read between the lines either.

Stating your goals is also a way of managing your own expectations. If you don’t, you’ll never find the satisfaction you seek and your frustration and anger will never be resolved.

That’s good consumerism — and — it’s sharp patienting. It’s Patientude* at it’s finest.

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*Patientude: the attitude and skills that get you the health care you deserve