Is Medical Records Privacy A Lost Cause?

[tex]

Hi all,

When the new national electronic medical records system becomes a reality, I have a hunch that privacy will only exist in our memories, unless some sort of serious mandatory legal safeguards are put into place first. There's no question that a digital system is needed, but as in everything that goes digital, privacy is bound to be the first casualty, unless some changes are made:

http://online.wsj.com/article/SB1000142 ... 64060.html

Tex

[Gayle]

Here, here. Privacy of medically related information is already a lost cause. Yes, I read that WSJ article this morning also and am writing a letter regarding.

One person’s experience:

13 months ago I was prescribed Asacol in an attempt to move off of Entocort.

I filled ONE prescription, took the Asacol for less than 3 weeks and experienced some highly negative results. After counseling with the Physician’s office it was decided that I am a person who can not take Asacol. I discontinued the drug and put it away, never to let it cross my lips again. (i.e. that prescription never refilled)

Low and behold, I started getting glossy advertisement direct mailings, and even a phone call, about Asacol. These mailings, and I presume the phone call, originated from the manufacturer of Asacol, which is Johnson and Johnson, headquartered in Cincinnati, OH. Now, over a year later, I am still getting these mailings.

Since this prescription was only filled one time at the local Walgreen’s pharmacy – there was no other way that J&J could have gotten my mailing address AND phone number. This information could only have come from somewhere in the Walgreen’s system. There was no other source possible. For a very definite reason which I won’t bother to go into here, this could not have come from the originating Physician's office.

As I was not (and am not) interested in getting such trash through the mail (or by phone) I went back to the Walgreen’s where that prescription was filled. They of course hotly denied any responsibility for such a thing sighting “Walgreen’s privacy policy”! Baloney!!

I really don’t suspect that the local pharmacy was into such activity, they are MUCH to busy. However some "data mining" took place somewhere in their system. And more than likely, J&J paid for the “service”.

Not only that, but they assumed (presumed) to know my diagnosis, --- and their assumption/presumption was incorrect.

Computerized health care information can be used in many ways. Some good, and SOME NOT SO GOOD. Be careful what you ask for!!!



Gayle

[mbeezie]

Timely topic for me. I am in private practice and am getting ready to start electronic files - paper file storage is a nightmare. Before I started I contacted my licensing board and was told it was "probably" ok. The only problem I could run into would be if my records were subpoenaed as they might think I left something out purposely in the scanning process. Puhleez - I could easily leave anything I wanted out even with my paper files. The licensing board rules are very strict on how we maintain confidentiality and get permission to to disclose information and I believe the average practitioner abides by their own board rules. The problem arises with places like Walgreens . . . they absolutely should be required to get permission before giving any info out.

With that said, there really is no true confidentiality, even with paper records. Think about . . . they can easily be stolen misplaced or left out for others to see. Every piece of mail we get from medical services is a potential violation of confidentialy. The problem isn't paper vs elctronic - they are neutral - the problem is people behaving badly.

Mary Beth

[Stanz]

Our healthcare records haven't been "safe" for many years. I'd hope that there are some sort of mandatory legal safeguards put into place on every aspect of our lives, but the reality is that it's already out there and has been for a LONG time.

Anyone with pre-existing conditions has been paying for it for decades if they have had private insurance. They don't care if you are innovative and try to actually find answers. My medical record shows tests for RA, Psoriatic Arthritis, lead poisoning and endless other stuff that I've asked for over the years. And guess what?? it makes no difference that I tested negative on nearly everything these nimrods tested me for, except for the lead poisoning, and that I have treated myself for w/o rx drugs, that I have paid for all of my "Alternative Care" with Naturopaths who have really helped me. The reality is that even if a test was negative - well, according to MY medical records, I still have all this stuff. I have Arthritis, I have Psoriasis, I have MRSA - even though ALL tests for these were negative. Most people would be shocked by their medical records were they to actually request and read them.

I've paid for Chelation for my lead poisoning, Prolotherapy for damage to my thumb and wrist that was clearly seen and reported by the technician checking it on X-Ray after I fell. The bones were dislocated and since they weren't broken I guess that was OK with my PCP, so nothing was done and I just "assumed" things were OK. Which resulted in the eventual rec for a trapeziectomy because of bone loss and pain so severe that I literally couldn't crack an egg w/o wincing.

So, now my MC treatment is out of pocket, because my insurance wouldn't/doesn't cover it and judging from what I've researched on Entocort, I am a winner here. Most of the time I was paying for my own health insurance as a self-employed person, my premiums were HUGE and growing monthly and nearly completely worthless except for the usual yearly maintenance stuff.

So, my insurance company would have been apparently happy to pay for Methotrexate, Sulfasalazine, all the $80/a tube drugs for my skin issues and all the other drugs I would have eventually have had to take because of the problems they caused, and then, most recently, for Entocort, which would have cost them around $900/mo., but they WON'T pay for my $150/mo OTC meds that have been successful in treating my MC. They won't pay for my 1K/yr for prolotherapy, but they would have paid over 5K for surgery to do a trapeziectomy and then even more for PT after surgery, which is only about 50% successful statistically.

It is beyond time that the Insurance and Drug companies are not in charge anymore. Us babyboomers need to be aware of the dangers of the information we post online that would make us vulnerable to scammers, as Polly has just experienced. Reality is that there are lots of people and organizations that are happy to profit from our pain and we better be wary. I trust no-one and that is pretty sad, isn't it?

If you don't shred every credit card offer, every piece of mail that is an "offering" of service that originated out of some entity that has to know your age, etc. then you are living on borrowed time before you are scammed.

C

[Polly]

Well, as someone who just had their identity stolen, you can guess how I would answer this. LOL!

On the other hand, it drives me crazy to have to fill out separate duplicative health histories every time I see a different doc - especially when they are all in the same hospital.

Nothing is really safe, I'd guess.

Love,

Polly

[barbaranoela]

well I have to add my Xperience with Walgreens---which is** Never had** a problem--
I have always gotten very good info when I had been given a new drug----once I Had been given a drug for my psorasis and Walgreens said *no-no* cus one of the ingrediants could cause heart issues---!!!!!!

So betcha U that I called my skin doc and had a bit of a conference with her!!!!

And as far as any mailing connected with products/prescriptions --never have I been bothered!!

Barbara

[ant]

Since my MC dx I have registered on a few nutritional websites etc. I have now noticed when I surf the web on totally unrelated matters (e.g. the economies of Asia) I get targeted ads about "healthy" slimming supplements etc. that I never got before.

It is second-rate data mining and marketing since, as a result of malabsorbtion, I am now TOO slim, but it is scaring none-the-less that I am on a data base or two as someone "interested in diet". I wonder what other data basis I am on?

All best, love ant

[tex]

Ant,

Google Ads, of course, target your "interests", once they "learn" about any of your interests, on any site that uses Google Ads. That "learned" data, however, should never extend past the original site. There are some unscrupulous individuals, (and websites), though, who are capable of tracking you wherever you go, by writing a cookie deep in the operating system of your computer, (where it can't be removed, by most computer utility programs, designed to remove all cookies, personal information, etc). You have to really know your way around a computer, in order to find those "deep" cookies, because they can be hidden in so many locations. I'm not aware of any program that's available, that's capable of locating them, reliably, though I do know how to "set" such cookies. (In case you're wondering - no, I have never used that technology, because it's not only an invasion of privacy, but it's also illegal for other reasons, since it makes "permanent" changes to the operating system on your computer, without your permission, or your knowledge).

Tex

[Gayle]

Mary Beth said:

there really is no true confidentiality, even with paper records. Think about . . . they can easily be stolen misplaced or left out for others to see. Every piece of mail we get from medical services is a potential violation of confidentialy.

It is absolutely true, that information has been on charts for as long as written records have existed. But just as it is an annoyance for users to have to search and dig through all the chaff in a chart for relevant information, that same time consuming inconvenience of having to wade through pages and pages --- also serves as a deterrent to information theft. Most theft is a matter of convenience. Computer databases, and then their merged databases, merely make for convenience by simplifying any search for information. And they do.

Also, in more recent times we all know that big Pharma MARKETS their drugs BIG TIME! We put up with that nonsense on TV all the time. However, it would not be especially suitable for their aims to “mass market” a drug such as Asacol, with its very limited number of users. So they instead want to target advertise to individual users, --- whose information shall be obtained via the Pharmacy that filled a prescription. As there are several 5 ASA’s on the market, what J&J is doing is pitching their brand. All drug marketing/advertising is disguised (?) and justified as patient education.

Polly said:

it drives me crazy to have to fill out separate duplicative health histories every time I see a different doc - especially when they are all in the same hospital.

I bet we all get tired, as well as sometimes irked, at filling out forms at the DR’s office … again and again and again. The newest wrinkle I have run across is with our Internal Medicine group now offering a “secure” web-enabled portal for billing and appointment information, etc. In looking through the site I found a page for a patient to enumerate medical history, and in particular any/all surgical procedures they may have had. No way am I going to fill that out on the computer. They already run their office totally with computer input on each visit, no paper chart is ever in evidence. They have input everything they ever though relevant in the past. No way am I contributing more in this fashion.

Barbara said:

well I have to add my Xperience with Walgreens---which is** Never had** a problem--

Glad that your Walgreen’s experience has been great.
Another experience last fall was yet another chapter in our history with Walgreen’s.

I happened to be in the vicinity of our DR’s office so stopped in to get flu shot when their supply arrived. DH here, on the other hand, waited for his appointment to get his flu shot, but by that time, the office had run out of their allotment of flu vaccine. Their advise was to just "go to Walgreen’s. Walgreen's is such a large block purchaser of the vaccine that they command access to the largest allotment of vaccine", which in turn limits the supply Drs. offices can get for their patients.

OK, fine. So that was what he did. There are no words that I can put into print here for the aftermath of obtaining that one vaccine through that Drug store. Somewhere in their system, they royally screwed up his insurance information. (NO he was not a newbie to their system, in fact we have lived in the same house and used the same local providers for more than 30 years.)

Details of the time and frustration it took DH to get this straightened out defies words. Polly’s experience with ID theft and the tremendous effort it has been for her to get control kind of said it all. His expressions of frustration were not nearly as refined and dainty as hers were!

Walgreen’s has become more of a convenience store, and the company now so immense. Everything is centralized, and all connected electronically. So there is economy of scale, accompanied by ever increasing number of ways to get things screwed up, as well as ability to corner the market.


Cheers,
Gayle

[Gabes-Apg]

In general, organisations (small and large) do not allocate adequate funding to the task of managing and storing records. (both paper and electronic) it is considered an 'overhead' and most will only do the minimum, and generally will only upgrade should it be an outcome of an audit, ie like a sarbines oxley audit if they are a publically listed company.

no one focusses money and time and resources to this task until something goes wrong. Ie the company computers are hacked or completely fail and they dont have adequate back ups.
Even then the focus on privacy is not the major concern.