Data-mining: Australia Just Calls It Something Else

In Australia, the data mining industry pays doctors to sell patients' prescription records. In the US they pay pharmacies, hospitals, and PBMs. See Article.

A complaint to the Australian Privacy Commissioner was dismissed because the data miners claimed that patients and doctors were "de-identified". But it is very difficult to fully de-identify personal health data so that re-identification is impossible. If true, the industry should have offered proof that their methods actually work and that the data cannot be re-identified.

As in the US, the theft and sale of personal prescription records is rationalized with claims that it can be used to "provide valuable insight into healthcare trends-- including the spread of infectious diseases". The word that describes using data to provide "valuable insights" is "research". It happens to be both illegal and unethical to do research without informed consent.

HIMSS & Who is Promoting HIT in Stimulus Spending?

This story tells how HIMSS and Harvard's Blackford Middleton promoted spending billions on health IT in the stimulus bill.

HIMSS and Blackford believe that health technology will be the silver bullet that enables healthcare reform and kills/slows higher costs. That may be possible, but is highly doubtful because the billions are such a bonanza for the health IT industry.

Will this be yet another example of the stimulus billions being used to prop up large corporations, but not to save individual patients who are sick?

Not only does most of health IT vendor industry NOT care about whether healthcare reform succeeds or not, they actively fought to weaken Americans' rights to privacy and security. By law, industry cares about maximizing revenue, not treating the sick.

So the BIG question is: will the government require all electronic health records systems to have the tough privacy and security measures the public expects and needs to trust these systems? Will the government require electonic health systems to build in our legal and ethical rights to privacy up front?

Most of the HIT industry lobbied to sell the same old dinosaur products and against privacy. The incumbents are very powerful and not interested in change OR IN OUR PRIVACY RIGHTS.

Financial System vs. Healthcare System

The financial system is often lauded as being good at protecting Americans' sensitive financial and demographic data, but the evidence is not so clear. Heartland had a massive breach of credit card data in its system of sponsored banks. In addition to the $12.6 million in costs, it will also have to pay to "implement end-to-end encryption when payment data is sent from the merchant to the processor".

Will breaches of healthcare data cost any less? That is highly doubtful. The pain and exposure is far worse and there are NO remedies. The privacy of health data can never be recovered or restored. With identity theft you can eventually recover from the damage and restore your credit.

Plus its harder to protect electronic health data because there is SO MUCH MORE sensitive personal data than exists in financial systems. Payment and credit card data are just the start, everything is included in electronic health systems, from prescriptions to DNA.

And compared to the financial industry, the healthcare industry has millions more employees----of insurers, hospitals, pharmacies, data management and data warehousing corporations, HIT vendors, and even state and federal government agencies----who all have access to sensitive data.

See article "Heartland breach cost $12.6 million, CEO says"

First HIT Policy Committee Meeting on Stripping Privacy Away?

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. See the quotes from Drs Calman and Clark. The title of the article says it all: "Committee studies public health, research".

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.

HHS noted in the Preamble to the HIPAA Privacy Rule that 600,000 Americans/year avoid early diagnosis and treatment for cancer because treatment records are not private private. Two million people/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 commitee 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.

It looks like patients' and consumers' best hope for preserving their health privacy rights in electronic systems may be Gayle Harrell. She may be the only committee member who can face reality.

A Start to Securing PHI?

Sometimes press releases for new products tell us far more about the risk of identity theft in electronic health systems than the mainstream press or trade journals.

Check out this zinger quote: "Most organizations don't even know where their PHI is." Why doesn’t the mainstream press tell the public that the health care organizations (like hospitals) have no idea where all their sensitive personal health data resides?

How about this: "The software (Identity Finder) automatically finds PHI such as social security numbers, medical record numbers, dates of birth, driver licenses, personal addresses, and other private data within files, e-mails, databases, websites, and system areas. Once found, the software makes it simple for users or administrators to permanently shred, scrub, or secure the information." Emails? Who sends drivers license numbers, SS#s, and Dates of Birth in emails? Clearly lots of healthcare organizations do.

We can only hope products like this sell.

See full article at http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/05-05-2009/0005019328&EDATE

Reducing Cost or Care? Orszag on HIT

Fascinating 'insider' article on the budget process and the Orzag/Obama plan to reduce healthcare costs by building a health IT system 'wired' for data mining:
"At the core of both the stimulus bill and the Obama budget is Orszag’s belief that a government empowered with research on the most effective medical treatments can, using the proper incentives, persuade doctors to become more efficient health-care providers, thus saving billions of dollars. Obama is in effect betting his Presidency on Orszag’s thesis." (See Article)

"Orszag seems more right than wrong about how to bring down health-care costs, but the truth is that, while there is obviously a great deal of waste in the American medical system, nobody knows for certain whether Orszag’s plan—which is now Obama’s plan—will work."

The plan relies on building HIT infrastructure to obtain the data for "comparative effectiveness" research. Republicans question whether this research approach can reign in healthcare spending enough and also fear it will lead to "vast government intrusion into the doctor-patient relationship". And the plan relies on building an HIT system to data mine ALL data without informed consent.

Our problems with the plan:

1) Orzag/Obama want ALL health data without informed consent for research, which is unethical, illegal, and destroys patient trust in doctors.
2) Orzag/Obama do not seem to realize that compelling the use of all health data will INCREASE the number of Americans who avoid treatment altogether (already in the millions). Many Americans know that avoiding care is the only way to keep health data private.
3) Millions avoiding treatment means millions delay care or never get care, increasing bad outcomes, deaths, and costs.
4) But worst of all for proponents of research: they won't get the data needed to learn what works best unless they restore privacy and patient control over data. Researchers cannot get the results all of us want with missing and inaccurate data!
5) To find out what the most effective treatments are for many costly conditions we have to actually have all the data in our systems. Today millions of people with Depression and Addiction have NO data in the system because they pay for private care or attend AA or NA so NO data is ever generated.
6) It will be a tragedy never to find out what treatments are most effective---and a HUGE waste of the billions of stimulus dollars to build an HIT system without privacy.

Key Quotes from the article:

• The deficit spectre has loomed over every major debate. The most contentious issue has been health care.
• Orszag came to the debate with a third option, which combined Summers’s concern about deficits and Daschle’s insistence that Obama tackle health care this year. He argued that health-care reform is deficit reduction.
• At the core of both the stimulus bill and the Obama budget is Orszag’s belief that a government empowered with research on the most effective medical treatments can, using the proper incentives, persuade doctors to become more efficient health-care providers, thus saving billions of dollars. Obama is in effect betting his Presidency on Orszag’s thesis.
• Orszag, despite his image as a number-crunching technocrat, considers himself an activist.
• At Princeton, he wrote his senior thesis on the relationship between the Federal Reserve and Congress. One of his conclusions was that “it is clear that Congress suffers from a lack of understanding of even the most rudimentary economics.” Orszag’s paper won an award for the best thesis that year in international economics or politics.
• At the Congressional Budget Office, Orszag hired specialists in health-care economics and turned the institution into a clearinghouse of information about rising health-care costs. When I asked him whether he was an advocate for policies at a place that was supposed to be nonpartisan, he replied, “I would say I was activist.”
• Kent Conrad, the chairman of the Senate Budget Committee, has made eradicating the federal budget deficit his life’s work. He told me that he picked Orszag to run the C.B.O. in 2007, and repeatedly asked him to testify before his committee, because they shared a concern about long-term spending trends.
• If there was one aspect of the President’s budget that demonstrated Obama’s European sympathies, Ryan said, it was health care. More specifically, it was Orszag’s approach to curbing health-care costs. “He believes you need to set up this über-bureaucracy—the institute of comparative effectiveness—which we’ll put smart people in, and they will design the metrics and the processes on how medicine is to be practiced,” Ryan said. “And then the federal government will impose and enforce those processes. . . . It is precisely what they employ in England. It’s precisely what they employ in Canada.” Rather than celebrate Orszag’s attempt to rein in health-care spending, Ryan seemed horrified by it.
• Obama will spend the rest of this year fighting a war on two fronts. On one are Democrats protecting old-line economic interests: oil, gas, and coal companies; agribusiness; student-loan companies; and pharmaceutical companies and medical providers who fear that Orszag’s ideas for cutting health-care costs will hit them hard. On the other are institutional interests. Obama will be battling committee chairmen who oppose his Pell-grant reforms, and placating senators who resent his willingness to use a feature of the budget process known as “reconciliation,” which limits debate and prevents the use of a filibuster, to pass his health-care plan.
• Orszag’s job is to defend Obama’s budget on all fronts, but he will be most deeply engaged in health care. I asked him how he could be so sure that his ideas about how to reduce health-care costs would work, mentioning that I had been surprised to learn that Paul Ryan and other Republicans had seized on health-care cost controls as the issue they believed would bring down Obama’s health-care plan and, with it, they surely hoped, his Presidency. Specifically, they believed that Orszag’s obsession with “comparative effectiveness,” research about which treatment options work best for a given ailment, will lead to vast government intrusion into the doctor-patient relationship. The research, which received major funding in the stimulus legislation and which was also included in Obama’s budget, had assumed a sinister meaning on the right.
• Orszag dismissed the criticism as a caricature. “I don’t see how it interferes with the doctor-patient relationship to suggest that it would be better if your doctor had more information about what would work for you,” he said. “The best way of putting it is that your doctor shouldn’t have disincentives to give you the higher-quality care, which often happens now.” Far from a huge government bureaucracy, he proposes a simple adjustment of incentives: “You get paid more if the treatment has been shown to be effective and a little less if not.”
• Orszag seems more right than wrong about how to bring down health-care costs, but the truth is that, while there is obviously a great deal of waste in the American medical system, nobody knows for certain whether Orszag’s plan—which is now Obama’s plan—will work.
• As Orszag explained his ideas, I couldn’t help remembering an encounter I had with him one day in the hallway at O.M.B. I told him that I had read his Princeton undergraduate thesis. He looked at me and smiled a little sheepishly. He said that at some point after his arrival at graduate school, in London, he had had a sudden realization: that he had made a mistake, and the crucial formula that he had used in his thesis, the one that had won him the prize, was incorrect. “It was so innovative,” he said, “that it was wrong.”