By Greg Scandlen
The newly created Health IT Policy Committee met for the first time on May 11 to figure out how to spend the $17 billion included in the stimulus bill. The whole project has already had a negative effect on the growth of health IT as the voluntary adoption of new systems has come to a screeching halt while people wait for the standards to come out from Washington. The Obama administration has decreed that it will issue these standards by December of this year, which is pretty unrealistic given that whatever this committee comes up with has to go through the Administrative Procedures Act process. That means being published in the Federal Register for public review and comment before being finally adopted. In effect, it has created a dead zone for health IT for 2009 and much of 2010 because no one wants to spend money on systems that may not comply with the yet-to-be-determined federal standards.
The head of the Patient Privacy Coalition, Dr. Deborah Peel, has been monitoring these developments and notes that without privacy assurances the whole enterprise will fail. She writes the following:
No surprise the new HIT Policy committee is gearing up to eliminate privacy, i.e. patient control over personal health information, using the excuse that the entire nation's records are needed for biosurveillance and research without informed consent.
The committee is dominated by industry appointees who will make sure the policies they come up with grant unfettered government and industry access to Americans' most sensitive personal data, from prescriptions to DNA.
What they don't get is they will lose the public's support and trust if they build a system where everyone's health records can be data mined for any research purpose. A Westin/Harris IOM poll found only 1% of the public would allow researchers unfettered access to their electronic medical records. The government and the research community are completely at odds with the public's rights to health privacy.
The reality is millions of Americans already refuse to participate in healthcare systems that harm them because they have no control over their medical records.
The Department of HHS noted in the Preamble to the HIPAA Privacy Rule that 600,000 Americans a year avoid early diagnosis and treatment for cancer because treatment records are not private. Two million people a year with mental illness avoid diagnosis and treatment for the same reason: their records are not private. The Rand Corporation found that 150,000 Iraqi vets refuse treatment for PTSD because their treatment is not private, resulting in the highest rate of suicide in active duty military personnel in 30 years.
Can this committee face reality when they have severe conflicts of interest and want the use of Americans' health data?
The lack of privacy drives millions away from healthcare. And the lack of privacy causes suffering and death--bad outcomes.
We need to add that the research that would come out of such data will be flawed because the information will be distorted. As we predicted when the law was passed, this is $20 billion being flushed down the toilet right before our eyes.