Friday, July 24, 2009

Bill O'Reilly is REALLY worried about the loss of his personal medical privacy...

So much so that he repeatedly returned to the topic while debating health care reform last night.

See Editorial with Video

68% of Americans share his fears and "Have Little Confidence that Electronic Health Records Will Remain Confidential" (see: Past Meetings: 7/21/09, slide #3 of the "Privacy and Security Work Group: Recommendations" presentation on the HIT Standards Committee website at:

O'Reilly debated with a doctor who doesn't seem to know that we have no control over our personal electronic health records, the massive damage that already causes, and how much more we will all be harmed if the Administration does not stop health IT systems from violating our privacy. Patient control over personal health information must be built into every electronic system up front.

Republicans, Democrats, Libertarians, and the majority of Amercians REALLY care about health privacy. The national concensus is that we should control who sees our health records; which has been our legal and ethical right since the nation's founding. Restoring the right to control PHI in electronic health systems will quell fears that the majority has have about electronic systems.

Quotes from the story:

• O’Reilly demonstrated his primary fear – almost panic – over the assumption that his medical records may not be private any more if President Obama passes some version of his healthcare bill. But enough with the foreplay -- O’Reilly dived right into his main fear. “My health records which are now in the hands of my private physician . . . they’re gonna be in Washington, right, so every malady that I have is gonna be seen by people in Washington. I don’t want that, do you want that?”

• After a little back and forth on the issue, O’Reilly repeated, “On a computer disk in D.C. will be what’s wrong with me . . . based on my medical history. It makes me very, very nervous.” Yes, we noticed.

• O’Reilly, again, focused worriedly on the privacy issue. “Let me ask you this,” O’Reilly posited. “It worries me that my medical history and your medical history is now gonna be on a disk in Washington, D.C., rather than the confidentiality of a doctor-patient, which we have had in this country for decades – that’s gone.”

• “The data is going to go to a bank in Washington, D.C.,” O’Reilly fretted. “ . . . I’m talking about you, Dr. Marc Lemont Hill, having a condition . . . with his program, it goes to D.C. and the bureaucracy decides how to treat you, not your physician. Doesn’t that worry you?”

• “So you don’t mind having your condition – whatever it may be – leave your doctor’s office and go to D.C. . . ,” O’Reilly said.

• O’Reilly hammered the privacy issue, once again, saying, “It’s going to a database that can be accessed . . . okay, if you don’t mind it, I do, and that’s a big concern of mine. We don’t have any privacy as it is in this country . . . .”

• Hill pointed out the bigger issue than the privacy of medical records (to most Americans, but not to O’Reilly) is 50 million uninsured Americans – and said that President Obama addressed that in the press conference.

• But the biggest question of all – what’s O’Reilly’s medical condition? The one O’Reilly is terrified might fall into the hands of the government? Is it really so awful that O'Reilly (not usually one to worry about privacy) is willing to kill health care reform just to protect it?

Wednesday, July 22, 2009

Genetic Privacy Debate hits Major League Baseball

The story highlights the use of DNA testing by 'employers'--Major League Baseball franchises. Baseball tests to verify the ages and identities of players from Latin America, but the test samples can also be used to detect familial genetic dieseases such as ALS (which Lou Gehrig had).

• “DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering,” said Kathy Hudson, the director of the Genetics and Public Policy Center and an associate professor at Johns Hopkins University. “The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information.”

The big problem is that the Genetic Information Non-Discrimination Act (GINA) does not stop employers or insurers from receiving or using genetic information. It isn’t enforceable.

Baseball players are not the only ones whose DNA and genetic tests can be used against them--the same thing can happen to all of us.

According to GINA, employers and insurers can't use genetic tests to discriminate against employees or enrollees in health plans, but there is no way to tell whether they do or not. Employers and insurers do not have to inform us if they have copies of our genetic or DNA records.

• Do you think an employer is going to tell you were passed over for a promotion based on your DNA?

GINA is toothless--it forbids bad behavior but there is no way to enforce it.

And Americans' genetic privacy is not protected by HIPAA. HIPAA makes it impossible for any of us to prevent OUR sensitive health information from being used by millions of 'covered entities' and 'business associates' for purposes we would never agree with--including using genetic tests to discriminate againts us.

Face Book users control who sees the personal information they post on their walls, but Americans can't control who sees their electronic health information. What's wrong with this picture?

The rules for spending $19 Billion on health IT are being written now. Now is the time we must press to restore control over OUR personal health data.

Stay tuned--sign up for our alerts and we'll tell you what you can do to save privacy.

Monday, July 6, 2009

UK Handing off their health records?

Federal Computer Week: U.K. mulls handing off national health records to Microsoft, Google

It will be interesting to see which one the UK chooses. Microsoft joined the bipartisan Coalition for Patient Privacy to urge Congress to restore consumer control over PHI in 2007. Google has not.

MS signed Coalition letters in 2007 and 2009, and agreed to support the Coalition's tough privacy principles and health privacy rights in electronic systems. HealthVault was built to adhere to the Coalition's stringent privacy principles. Open, public promises by major corporations are taken very seriously by federal regulatory agencies and consumer advocates.

The promises by the technology corporations that joined the Coalition are a rebuke to other HIT vendors and the data mining industry that will do anything to get their hands on PHI for all sorts of uses that patients would never agree to.

Today, the clearest sign of serious corporate commitment to health privacy rights is joining the Coalition for Patient Privacy and standing with consumers to build an ethical, legal HIT system---the only kind that will be trusted and succeed.