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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An incident right here in my office spawned this post.  Twice in the past week, a stranger’s medical records have arrived through my fax machine!  They come from an orthopedic practice, are several pages long, and regard a police officer who had back surgery and is not working, collecting worker’s comp.  They are very personal, detailed….

And I should NOT have copies!  The fact that they were sent to the wrong fax number — twice — is a huge HIPAA violation.  Yet, I guarantee you, this happens every day.

Why do I raise this point to you?  Because concerns over privacy and medical records are huge.  But that’s not new !  In fact, when it comes to medical records, regardless of HIPAA laws or anyone’s policies to the contrary, if someone wants your medical records, they can get them.

Here are some additional examples of privacy violations to give you a sense of what I mean:

• Elizabeth Cohen, CNN’s Empowered Patient, wrote about finding her own records online.
• Hospital workers stole and sold Brittany Spears’ medical records.

Further, there are many people who can access our records whether we want them to or not.  They include any payers who will pay on our behalf, such as health insurers or Medicare. Law enforcement personnel can access our records, too, if they believe they need them to prove a case.

What’s the bottom line here? If you want your records to be private, then it is up to YOU to make sure they stay as private as possible.  Especially now that our new president is planning to throw money into the electronic medical records pot.

Our records are going to end up online.  And I believe they should.  It’s efficient, and I believe there are enough ways they can contribute positively to both our health, and our health system, that it’s a smart move.

But that doesn’t mean we patients have to make stupid choices about putting them online ourselves.  There are a handful of PHR programs out there like Microsoft’s health vault and google’s health program, plus others that aren’t beholden to the HIPAA privacy laws. And, very frighteningly, large health organizations are working with these companies to put your records online.  The Cleveland Clinic is working with Microsoft, as is the Mayo Clinic.

So when it comes to making smart choices, begin by making smart decisions about how your records will go online.  Do NOT choose one of the free PHR (personal health records) applications that keep your records online, that does not fall under the auspices of HIPAA.  There are plenty of good PHR storage apps online that charge you a fee, that may be more secure.

You may also want to ask about your doctor’s use of electronic medical records, and how they are being implemented.  Specifically you want to know if the storage mechanism your doctor uses falls under HIPAA’s regulations.  And if they tell you your records are being managed by one of these big conglomerates that are (so called) free?  Personally — I would find another doctor to work with.

Your records will never be completely protected from someone who might want them.  But there’s a difference between letting the medical records cat out the door, and leaving the door open.

Learn more:

• 10 Myths about HIPAA and Privacy
• How to Request Your Medical Records
• EMRs – Privacy Limitations

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Have you had this experience?  Is negative a positive?  Or is positive a negative?

Isn’t this just a great example of the disconnect between the way the professionals talk and the way we patients understand?  or misunderstand?

Have you ever thought test results were OK only to find out they weren’t?  Or vice versa?

You can learn more about Dr. Eytan at his blog.

You can follow him at Twitter – and I hope you’ll follow me at Twitter, too!  You’ll get a heads up on the latest and greatest in patient empowerment.

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Here’s the bad news:  Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma.  Also written with Greek letters:  cutaneous ?/? T-cell lymphoma

To say that both Heather and I were shocked is an understatement.  If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.)  Thing is — like in my case four years ago — she has no other symptoms.  Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear.  So yes — shocked.

And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review.  That doctor is then responsible for getting the results back to Heather.

Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.

Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results.  Still.  Today.  Not a single phone call.  No one!

The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.

So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis.  Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma.  But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma.  Then what?

Second — when you don’t get test results back — go looking for them!  And don’t take no for an answer.  You can be polite, but you need to be assertive.  Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word.  And as far as her doctors are concerned — she’s still waiting!  (I’m having trouble stopping myself from calling these medical bozos what they are.  Oh.  Did I call them that?)

CGD-TCL is just as rare as SPTCL, no doubt about it.  It will be impossible to find a doctor to treat it who has experience with it.  I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease.  Easier said than done, I’m sure!  But what a blessing if she can actually find one.

If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog.  Then, keep Heather and her family in your prayers.

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CPT codes are the stuff a doctor’s practice is made from. I know — you thought patients were the basis for a physician practice, but no, CPT codes are more important than patients — even though I can guarantee that most doctors wish that was not true.

CPT Codes, Current Procedural Terminology Codes, are all those little numbers that show up on the bill you are handed as you walk out of the doctor’s office. They are supposed to represent every type of task performed in medicine — from a basic check-up, to diagnosis, to administering a shot, to giving a medical test, to the levels of that test, to surgeries, to anything at all. They are developed by the AMA, the American Medical Association, and are intended to be the standard by which all doctors get paid, and all insurance reimburses. The codes are revised regularly, and new codes are developed by an editorial board that represents the membership of the AMA.

Among the most frustrated of patients I hear from are those who can’t get diagnosed. There can be a number of reasons for not getting a diagnosis, but one of the big problems is that patients can’t find one central person to review all the evidence. They are sent from specialist to specialist, each looks at his own tests and results, but they don’t look at results from other doctors, except maybe the one who referred the patient.

I call this daisy-chaining. Each doctor represents a link to the answer. Each link might look at the information from the link it is connected to. But none of those links review information from links they are not directly connected to.

So what does that have to do with CPT codes? Plenty. Because the reason they won’t look at the other records is because there is no code for doing so — therefore — there is no way they can get paid (reimbursed by Medicare or insurance) to look at the big picture for a patient.

Why not? I have theories, and they all relate to money, of course. The AMA represents the doctors. One would think that if doctors wanted to do this kind of big picture diagnosing, or review of other’s notes and reports, then the AMA would develop a code for it, right? So theory #1 is that doctors don’t want to be doing so. They don’t want to be responsible for that particular task.

Theory #2 is that why would the AMA waste its time if insurance won’t cover the cost anyway? And that’s actually the root of today’s blog. A review of the new codes for 2008 shows that codes have now been developed for doctors who take phone calls or email from patients. However, the report includes a caveat that says Medicare and insurance companies won’t be reimbursing for them anyway.

So that explains why your doctor won’t do what you wish he would do — take a comprehensive look at all your health challenges, and help you get diagnosed even after seeing a slew of specialists. They wish they could — but they can’t. If they can’t get paid, they can’t stay in business. If they aren’t in business, then what good does it do for anyone?

I do give a bit of credit to the AMA for at least giving their new codes a shot — it’s a start. Many more are needed.

But what’s really needed is someone to kick the payers in the backside. They work for US, afterall — we pay taxes and we pay premiums. So why aren’t they held accountable to reimburse for all those codes?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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CPT codes are the stuff a doctor’s practice is made from. I know — you thought patients were the basis for a physician practice, but no, CPT codes are more important than patients — even though I can guarantee that most doctors wish that was not true.

CPT Codes, Current Procedural Terminology Codes, are all those little numbers that show up on the bill you are handed as you walk out of the doctor’s office. They are supposed to represent every type of task performed in medicine — from a basic check-up, to diagnosis, to administering a shot, to giving a medical test, to the levels of that test, to surgeries, to anything at all. They are developed by the AMA, the American Medical Association, and are intended to be the standard by which all doctors get paid, and all insurance reimburses. The codes are revised regularly, and new codes are developed by an editorial board that represents the membership of the AMA.

Among the most frustrated of patients I hear from are those who can’t get diagnosed. There can be a number of reasons for not getting a diagnosis, but one of the big problems is that patients can’t find one central person to review all the evidence. They are sent from specialist to specialist, each looks at his own tests and results, but they don’t look at results from other doctors, except maybe the one who referred the patient.

I call this daisy-chaining. Each doctor represents a link to the answer. Each link might look at the information from the link it is connected to. But none of those links review information from links they are not directly connected to.

So what does that have to do with CPT codes? Plenty. Because the reason they won’t look at the other records is because there is no code for doing so — therefore — there is no way they can get paid (reimbursed by Medicare or insurance) to look at the big picture for a patient.

Why not? I have theories, and they all relate to money, of course. The AMA represents the doctors. One would think that if doctors wanted to do this kind of big picture diagnosing, or review of other’s notes and reports, then the AMA would develop a code for it, right? So theory #1 is that doctors don’t want to be doing so. They don’t want to be responsible for that particular task.

Theory #2 is that why would the AMA waste its time if insurance won’t cover the cost anyway? And that’s actually the root of today’s blog. A review of the new codes for 2008 shows that codes have now been developed for doctors who take phone calls or email from patients. However, the report includes a caveat that says Medicare and insurance companies won’t be reimbursing for them anyway.

So that explains why your doctor won’t do what you wish he would do — take a comprehensive look at all your health challenges, and help you get diagnosed even after seeing a slew of specialists. They wish they could — but they can’t. If they can’t get paid, they can’t stay in business. If they aren’t in business, then what good does it do for anyone?

I do give a bit of credit to the AMA for at least giving their new codes a shot — it’s a start. Many more are needed.

But what’s really needed is someone to kick the payers in the backside. They work for US, afterall — we pay taxes and we pay premiums. So why aren’t they held accountable to reimburse for all those codes?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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Even their privacy statement (a misnomer — it should be called a No Privacy Statement) tells you that they are not required to follow HIPAA regulations. And I love this: the mission statement is this: “increase efficiencies for Physicians, Patients, Pharmaceutical companies, and Payers.” Uh-huh. Exactly what efficiencies does this take care of for patients? The efficiency of stripping them of their privacy?

I actually spent quite a bit of time on their website. There is some excellent information there — and I don’t discourage anyone from using the website to find articles or to use the message boards. I DO discourage you from sharing any information that can identify you personally — so where they ask for your mailing address or phone number or — ? — don’t do it! Make up some bogus information and set up an email address through some other means beside your main email address.

Yes, there is plenty of advertising — to your best ability, ignore it if you can. That’s the price of a “free” online application.

Here’s the part that gets me. Evidently there was someone right there in the oncologist’s office to encourage my loved one to sign up for the program….

As you know well in every other aspect of your life, there is no such thing as a free lunch. And thus it is true here, too. Only in this case, it could come at the cost of purchasing health or life insurance in the future, spam in your email box, junk in your postal mail box, or — who knows what they’ll dream up next?

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She tells me no one is really sure what to do. They can’t find water to drink, nor can they find masks to filter the air they breathe.

I’m a worried Mom, of course. On the east coast, we watch the news — but feel helpless to do more than watch.

It’s not so difficult for old Mom here to relate — I live in the northeast and we get blizzards that create emergencies every few years. Perhaps the difference is the once-burned, twice-shy maxim — no pun intended. We know they arrive every few years, so we know to keep batteries, water, blankets, etc around “just in case.”

For those in California with difficult medical conditions, I hope they’ve prepared their medical records for transportation, too. There’s an easy way that doesn’t involve putting them online, but makes them easily accessible. Included on your flash drive (see instructions when you link) — is your ICE information (In Case of Emergency.)

If you have a mind to, please keep Becca, her partner Ed, (and doggy Harley, too) in your prayers.

And as soon as you can, prepare YOUR records in case you find yourself in an emergency, too.

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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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