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

The Health Record Paparazzi is Above the Law and In Bed With Congress

We learned today that all of us are a bit like George Clooney: the Health Record Paparazzi loves a celebrity, but it loves the average American just as well. Instead of intrusive cameras flashing and TMZ taping our every move, we have insurers, employers, hospitals, doctors, pharmacies, drug companies, marketers, creditors and banks digging around for our most personal, intimate information.

HIPAA protects no one, including movie stars. The HIPAA regulations were changed by a Bush appointee that defy the ancient doctor-patient promise that when a patient goes to their doctor, whatever they share will be kept private. No one can make that guarantee anymore. To see the fine print visit Patient Privacy Rights.

Over 4 million individuals and businesses can see and use our health records, without consent and over objections. HIPAA is so broad it is hard to imagine who doesn’t have a legal right to your most personal details.

The Health Record Paparazzi can be stopped — but only by an act of Congress. Right now, Congress is working on legislation that will open up your health records even more. Everyone will have control over your health information except the patient.

We must have federal legislation that guarantees our right to control our most personal information and requires meaningful, enforceable penalties for everyone who shares our information without consent.