In the Healthcare Debate, O’Reilly’s Main Concern Seems To Be the Privacy of His Own Medical Records

On last night’s O’Reilly Factor (7/22/09)… 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.

President Obama: “. . . You may not see it because if you have health insurance right now it’s just being sent to the insurance company, but that’s raising your premiums, it’s raising everybody’s premiums, and that money one way or another is coming out of your pocket, although we are also subsidizing some of that because there are tax breaks for health care.”

“I think my head is going to explode,” O’Reilly cried. “I don’t know what he said . . . and I’m not being a wise guy . . . After another hour of Barack Obama explaining his program I still don’t know what it is . . . The man is incapable of breaking it down . . . It’s crazy!”

On a side note, accusing Barack Obama of being incoherent is about as ridiculous as accusing Sarah Palin of being eloquent. O’Reilly complained in the next segment (not shown in any of the videos below), ” I have a Master’s degree from Harvard University . . . I do not understand what the man is saying.” Well, that just goes to show you, an Ivy Le

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.

Baseball’s Use of DNA Raises Questions

Confronted with cases of identity and age falsification by Latin American baseball prospects, Major League Baseball is conducting genetic testing on some promising young players and their parents.

Many experts in genetics consider such testing a violation of personal privacy. Federal legislation, signed into law last year and scheduled to take effect Nov. 21, prohibits companies based in the United States from asking an employee, a potential employee or a family member of an employee for a sample of their DNA.

Dozens of Latin American prospects in recent years have been caught purporting to be younger than they actually were as a way to make themselves more enticing to major league teams. Last week the Yankees voided the signing of an amateur from the Dominican Republic after a DNA test conducted by Major League Baseball’s department of investigations showed that the player had misrepresented his identity.

Some players have also had bone scans to be used in determining age range.

In a written statement, Major League Baseball said that it used DNA testing in the Dominican Republic “in very rare instances and only on a consensual basis to deal with the identity fraud problem that the league faces in that country.” The statement added that the results of the tests were not used for any other purpose.

U.K. mulls handing off national health records to Microsoft, Google

Conservatives reportedly pushing for privitization

The British government is reportedly preparing a plan to give national health records to either Google or Microsoft, rather than creating a massive government database. Reports of the plan have sparked vigorous debates in the United Kingdom

The plan, as described in the reports, would privatize the National Programme for Information Technology’s Care Records Service. The government would entrust health records to either Microsoft HealthVault or Google Health.

Britain’s National Audit Office warns that the government’s digitization project is over budget and behind schedule, with a total cost to taxpayers of more than 12.7 billion British pounds sterling, the BBC said.

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.

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.

Bloggers rally for health data rights

More than 30 bloggers from the medical, technology and patient advocacy worlds are rallying to support patients’ right to obtain copies of their computerized health records from their doctors in the electronic format.

The Declaration of Health Data Rights — arriving just in time for Independence Day — says that patients should have the right to obtain “a complete copy of their individual health data, without delay, at minimal or no cost,” in computerized form, if it exists. It also says the sources for all the data should be clear, and patients should be able to share their information as they choose. Information about the effort and posts from participating bloggers are athttp://www.healthdatarights.org/.

Federal law already entitles patients to easy, cheap access to their health records in whatever format they exist, said Deven McGraw, director of the Health Privacy Project at the Center for Democracy & Technology. Too often, she said, patients, doctors and hospitals are not aware of the law.

As more doctors and hospitals adopt electronic medical records systems with the $19 billion in subsidies Congress approved as part of the stimulus package, patients and their doctors need to have a clearer understanding of that right, McGraw said.

On HealthDataRights.org and their Declaration

HealthDataRights.org supports only ACCESS to personal health data–which is a no-brainer and a right Americans have always had. The stimulus bill makes clear that we all have the right to copies of our electronic health records because some providers have make them so hard to get.

But HealthDataRights does NOT support the most critical right of all: the right to CONTROL who can access and use our personal health data in electronic systems. They even claim “privacy” stops data flow and will stop research–which is a lie. Informed consent and control over our own data ensures it’s there when we want it and ONLY for uses or research that we agree with.

HealthDataRights.org is a faux consumer rights organization, as revealed in their FAQs:

• “The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability.” TO WHOM WILL THE ENTIRE NATION’S DATA BE AVAILABLE? TO THE DATA MINING AND RESEARCH INDUSTRIES THAT WANT OPEN ACCESS TO OUR DATA FOR USES WE HAVE NO CONTROL OVER.

• “Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases.” MILLIONS OF PATIENTS EVERY YEAR SEE CLEARLY HOW DANGEROUS HEALTHCARE IS WITHOUT PRIVACY AND DELAY OR REFUSE CARE, LEADING TO DEATHS FROM CANCER, PTSD, AND DEPRESSION—COSTING FAR MORE THAN IF TIMELY OR PREVENTIVE CARE WAS PRIVATE.

• “At the same time, we know that too often “privacy” is used as an inappropriate excuse to keep people from gaining access to their own health data and information, which they have every right under HIPAA and most state laws to view and access.” CLAIMING PRIVACY AS AN EXCUSE NOT TO GIVE ACCESS TO PERSONAL HEALTH DATA IS WRONG OF COURSE, BUT WORSE AND FAR MORE DAMAGING IS EXPOSING HEALTH DATA TO THEFT, SALE, AND MISUSE BY MILLIONS OF HEALTH-RELATED BUSINESSES AND ALL GOVERNMENT AGENCIES.

• “Does this Declaration suggest people should have exclusive rights to their data?

“No, we are not suggesting that, although this is a thorny issue. Doctors need accurate information about their patients and are required by law to maintain this information. Labs are required to hold onto their test results for up to seven years. There are also health care organizations that use their patients’ or members’ data to suggest improvements to the care delivered to them, usually with a blanket permission signed by the patient at the initial visit and later forgotten. This is not necessarily a bad thing and may be very beneficial for patients, even though permission is not sought for each particular instance of that use. In addition, aggregated and anonymized, population data obviously is key to learning what is working for whom, what is cost effective for whom, and what is the best way to treat any condition for whom. We are supportive of organizations that are endeavoring to improve public health by learning from population data. An “exclusive right” could be read as contradictory to that. What we do affirm, strongly, is that people do have a right to their own data.”

PATIENTS SHOULD HAVE EXCLUSIVE RIGHTS TO THEIR HEALTH DATA—-EVEN NEWT GINGRICH SAYS AMERICANS SHOULD “OWN” THEIR PERSONAL HEALTH DATA.

THIS IS WHERE THEY STATE THAT THE RIGHT TO PRIVACY—THE BASIS OF THE HIPPOCRATIC OATH AND OUR STRONG EXISTING LEGAL RIGHTS TO PRIVACY—WOULD “BE CONTRADICTORY” TO PUBLIC HEALTH RESEARCH. PUBLIC HEALTH DATA IS COLLECTED BECAUSE OF LAWS THAT WERE DEBATED BEFORE BEING PASSED. BUT FUTURE “POPULATION HEALTH” RESEARCH USING ELECTRONIC HEALTH SYSTEMS WILL TAKE PLACE WITHOUT CONSENT BECAUSE EVERY ELECTRONIC HEALTH RECORD WILL BE “WIRED” FOR DATA MINING WITHOUT PATIENT KNOWLEDGE OR CONSENT. RESEARCH WITHOUT CONSENT VIOLATES MEDICAL ETHICS AND INTERNATIONAL TREATIES.

• Who is funding HealthDataRights.org?

HealthDataRights.org is entirely volunteer and has no funding. Any direct costs are being paid out of pocket by the individuals involved. THE INDIVIDUALS’ NAMES ARE NOT LISTED.

You can see the story on HealthDataRights.org debut at:http://www.localhost:8888/pprold/site/News2?page=NewsArticle&id=9475&news_iv_ctrl=-1

Is Government Health Care Constitutional?

The right to privacy conflicts with rationing and regulation.

Is a government-dominated health-care system unconstitutional? A strong case can be made for that proposition, based on the same “right to privacy” that underlies such landmark Supreme Court decisions as Roe v. Wade.

The details of this year’s health-care reform bill are still being hammered out. But the end result is sure to be byzantine in complexity. Washington will have immense say over how, when and through whom Americans are treated. Moreover, despite the administration’s public pronouncements about painless cuts in wasteful spending, only the most credulous believe that some form of government-directed health-care rationing can be avoided as a means of controlling costs.

The Supreme Court created the right to privacy in the 1960s and used it to strike down a series of state and federal regulations of personal (mostly sexual) conduct. This line of cases began with Griswold v. Connecticut in 1965 (involving marital birth control), and includes the 1973 Roe v. Wade decision legalizing abortion.

But privacy is ALREADY gone!

Refer to Wall Street Journal article: Is Government Health Care Constitutional?

The authors fear that Americans’ health privacy rights will be eliminated by health reform if a proposed “public plan” evolves into “single payer”.

They are too late, there is no privacy (the right to control personal information) in the US electronic health system —EXCEPT for the strong new rights Congress added to the stimulus bill: the ban on sales of PHI, the right to segment sensitive records, and the right to limit disclosure of PHI to health plans for payment or HCO if treatment is paid for out-of-pocket.

Our strong existing ethical and legal privacy rights (a powerful national consensus arrived at over 200+ years) are being totally ignored by federal and state government and industry.

The authors clearly don’t know that we have no health privacy today or that privacy advocates in the bipartisan Coalition for Patient Privacy (representing 10 million Americans) work to restore those rights.

In 2002, amendments to the HIPAA regulations granted new rights to corporations and government to use ALL health data without informed consent for purposes no one would ever agree to AND eliminated Americans’ rights to give consent before our data is used. See:HIPAA_Intent_Vs_Reality . In 1999, the HIPAA statute granted law enforcement unfettered access to all electronic health records without informed consent or any judicial process.

Both Democratic and Republican Administrations and Congress have contributed to eliminating patients’ rights to control personal health information. The ONC-Coordinated Federal Health IT Strategic Plan: 2008-2012, requires all EHRs to be “wired” for data mining and requires every citizen to have an EHR by 2014.
See:HITStrategicPlan08.pdf

The Federal Strategic Plan grants “back door” access to the nation’s electronic records to government agencies; to the for-profit research industry for P4P, QI, population health, genetic research (personalized medicine), etc; and to the insurance industry to detect fraud (this is one of the most offensive and discriminatory measures planned–the last people patients want to have MORE access to sensitive health records are insurers and employers).

Key Quotes:

• The Supreme Court created the right to privacy in the 1960s

• the justices posited a constitutionally mandated zone of personal privacy that must remain free of government regulation, except in the most exceptional circumstances.

• Taking key decisions away from patient and physician, or otherwise limiting their available choices, will render any new system constitutionally vulnerable.

• if over time, as many critics fear, a “public option” health insurance plan turns into what amounts to a single-payer system, the constitutional issues regarding treatment and reimbursement decisions will be manifold. The same will be true of a quasi-private system where the government claims a large role in defining acceptable health-insurance coverage and treatments. There will be all sorts of “undue burdens” on the rights of patients to receive the care they may want. Then the litigation will begin.

• In crafting the law, however, its White House and congressional sponsors must keep privacy — that near absolute right to personal autonomy they have so often praised and promoted — squarely before them. The only thing that is certain today is that the courts, and not Congress, will have the last word.

The authors tilt at the wrong windmill –not realizing they are too late: the privacy for health data in electronic systems is already GONE. We hope they will join us and work to RESTORE Americans’ longstanding ethical and legal rights to health privacy–regardless of a “public plan” or whether it turns into “single payer”.