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Tuesday, September 30, 2008

Health Privacy: You Have None

There has been a push to place your health records in electronic form for several decades. Our organization has always spoken against this plan and HIPAA. It is an important issue at this time, once again, because candidates for presidential office are in favor of electronic health records as a cost control action.

And you might ponder why Microsoft and Google are at odds with each other to get you to (hastily) post your medical records on their servers.

There is money to be made!
"A federal agency, not Congress, took away your right to control your health information. Your right to control the use and disclosure of your personal health information was eliminated in 2003 by regulatory changes made to HIPAA, the Health Insurance Portability and Accountability Act. HIPAA is a complex 1,500 page set of rules covering things such as the transfer of health insurance when you change jobs. (Read more about HIPAA and the Elimination of Consent)."
Become educated and just like the current bailout nightmare, vote against this type of legislation.

Is there anything in your health record that you would not want to share with others? Prescriptions for anti-depressants, anxiety, cancer, long-ago abortions, AIDS or HIV, testing for the Alzheimer gene, your child’s Autism or ADD, sexual impotency prescriptions, hospital admissions, or anything else?

You assume your most personal health information is private, right? It's not.

Like most Americans, you probably believe:

* What you tell your doctor is totally private
* If you sign "privacy notices" at a doctor's office, a pharmacy, a hospital or a lab, you health records will not be used or disclosed without your permission
* No one can look at your sensitive health records, prescriptions or tests without your permission

NONE of these assumptions are true. Your right to decide who can see and use your sensitive, personal health information was eliminated in 2003. See how.

Who Can See and Use your Health Records?

Over 4 million businesses, employers, government agencies, insurance companies, billing firms, and all their business associates that may include pharmacy benefits managers, and pharmaceutical companies as well as marketing firms and data miners. See a sample chart here.

Patient consent is no longer required to share health records, no matter how embarrassing or intensely personal the contents may be. While your doctor may wish to protect your information, once the records are sent out of their offices, they can no longer control who cna see or use your information.

Whose Health Records are Vulnerable?

Employees: Today, laws governing access to health records expose employees to the possibility of employment discrimination. Thirty-five percent of Fortune 500 companies admitted to looking at employee’s health records before making hiring and promotion decisions (65 Fed. Reg. 82,467). As employers seek to reduce health insurance costs, little prevents them from viewing employees’—and employee’s families—health records to get rid of capable employees with costly health conditions. Employment should be based on who can do the job—not what's in our health files.

Women: Women are particularly vulnerable to discrimination in employment, insurance and in the financial and credit arena. Women have specific, sensitive health issues that have nothing to do with what kind of job they can perform or whether or not they should get credit or insurance.

Children: In the age of genetic testing, how will information about our children’s health affect their futures? Should they be denied entry to college because they tested positive for a cancer gene or were treated for depression as a teenager? Should they be turned down for a job because they have a grandparent who had Alzheimers? Without privacy, our children’s health records could deny them the future they deserve.

Seniors: After a lifetime of health treatment, seniors’ health records contain a wealth of information that could harm them, their children and their grandchildren. Should a grandmother’s Alzheimer’s disease keep her grandchildren from getting a job? Should a widower’s depression over the death of a spouse keep him from getting auto insurance? Should a diagnosis expose a senior to drug company marketing disguised as "education"?

Consumers: As health records are spread over electronic networks, banks, insurance corporations, and lenders can access our most personal health records. Should homeowners pay higher interest rates because they are cancer survivors? Should drivers be denied automobile insurance because they have a medical condition? Without privacy, consumers’ health histories expose them to real financial risks and threaten their livelihoods.

How Did This Happen?

A federal agency, not Congress, took away your right to control your health information. Your right to control the use and disclosure of your personal health information was eliminated in 2003 by regulatory changes made to HIPAA, the Health Insurance Portability and Accountability Act. HIPAA is a complex 1,500 page set of rules covering things such as the transfer of health insurance when you change jobs. (Read more about HIPAA and the Elimination of Consent).

The changes mean that millions of strangers, as well as employers, can use your health records for reasons that have nothing to do with your treatment or improving your health care. In an era of Electronic Health Records (EHRs) and Personal Health Records (PHRs), the problem gets much worse.

Electronic health records are supposed to save lives and money -- how can you be against progress?

We're not. In fact, privacy is the key to progress with Health Information Technology (HIT). The potential benefits of electronic health systems cannot be realized unless Americans have confidence that ironclad privacy protections are in place for online health records, databases, and networks. As Americans realize how open their records actually are, they will avoid treatment and be much more selective about important information they share with their doctors. Patient Privacy Rights applauds the smart use of technology in medicine and the healthcare industry.

Bottom line: No one should have to choose between privacy and health.


marmann said...

I believe it even goes much further than you described.

Almost three years ago, I suddenly developed pancreatitis. They referred to it as "idiopathic pancreatitis" because a cause couldn't be found. My triglycerides were a little elevated, so they blamed it on that.

Seven hospitalizations and 1-1/2 years later -- now having become very ill and having had to give up my health insurance when the premium rose to literally 50% of my gross annual income -- someone decided to do diagnostic DNA testing for cystic fibrosis on me without my prior knowledge or consent. (Had I been given the courtesy of hearing the words "cystic fibrosis" uttered in my presence, I would NOT have consented and would have chosen instead to research insurance laws in perhaps a nearby "friendlier" insurance state if there was ANY possibility of my having cystic fibrosis.)

One month after return of the test, I received an undated letter from my primary care physician that my testing proved positive and that CYSTIC FIBROSIS is what is causing my pancreatitis.

I was 54 YEARS OLD at the time and my main symptom was pancreatitis. I certainly had no reason to suspect CYSTIC FIBROSIS as the cause of my disease, yet, indeed that is what the cause is.

I will now forever be denied health insurance. My car has been respossessed, and I have great difficulty getting to and from the Adult Cystic Fibrosis Center, which is 70 miles from my home.

I can't begin to tell you the number of attorneys I have contacted regarding this. I even accessed the laboratory's own website that has its own "informed consent" form that I never saw or signed.

Ironically, I work from home as a medical transcriptionist (though I'm working less and less these days), and one of the biggest problems in this profession is the fact that work I should be doing is being outsourced to countries like Pakistan and India. I certainly don't have to go into detail about what damage can happen when someone has access to your name, Social Security number, date of birth, list of illnesses and medications, etc.

In fact, a couple years ago, I began to transcribe a note of a patient with the very same name as a Washington politician whose name was being tossed around as a possible Presidential candidate. I laughed, thinking this person must get teased a lot for having the same name. I stopped laughing when I realized (when it was dictated) that this, indeed, WAS the politician and not just someone with the same name.

This system needs to be revamped from its sloppy state. Patients need to be treated with dignity and respect, and records need to be confidential, as falsely promised to patients when they receive treatment.

Anonymous said...

No more Drs. for me! I'd rather be dead.

Anonymous said...

As more as I get to know stuff like this as more I understand why certain people are so anti-social. This is a totally corrupted and rotten society. It may feel safer and peaceful to live among gorillas in the woods...
A German philosopher once wrote: "As more as I know people as much more I love my dog". Does this make you think?