The Health IT Scandal the NY Times Didn’t Cover

Below, a guest-post by Michael L. Millenson, president of Health Quality Advisors LLC.  An early, and vocal quality-of-care evangelical, Millenson is the author of the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age.

As health information technology honchos gather for the annual HIMSS trade show and schmoozefest, it’s a safe bet the industry “scandal” the New York Times placed on page one recently will breed more bored yawns than buzz. The real scandal in health IT involves the customers, not just the vendors, but that’s a topic for quiet conversations journalists can’t cover.

In case you missed it, the shocking news was that health IT companies that stood to profit from billions of dollars in federal subsidies to potential customers poured in ­– well, actually, poured in not that much money at all when you think about it ­– lobbying for passage of the HITECH Act in 2009. This, putatively, explains why electronic health records (EHRs) have thus far failed to dramatically improve quality and lower cost, with a secondary explanation from athenahealth CEO Jonathan Bush that everything would be much better if the HITECH rules had been written by Jonathan Bush of athenahealth.

Next up: corporate lobbying for passage of the 1862 Pacific Railroad Bill is blamed for Amtrak’s dismal on-time record in 2013.

The actual scandal is more complicated and scary.  It has to do with the adamant refusal by hospitals and doctors to adopt electronic records no matter what the evidence. Way back in 1971, for example, when Intel was a mere fledgling and Microsoft and Apple weren’t even gleams in their founders’ eyes, a study in a high-profile medical journal found that doctors missed up to 35 percent of the data in a paper chart. Thirty-seven years later, when Intel, Microsoft and Apple were all corporate giants, a study in the same journal of severely ill coronary syndrome patients found virtually the same problem: “essential” elements to quality care missing in the paper record.

That clinical evidence and the way in which the world outside medicine had been transformed by computers did almost nothing to change health care. Computerized medical records were available: before there was “Watson,” the IBM computer helping doctors make decisions, there was “Watson,” the IBM chairman, vainly trying to sell electronic records to doctors as early as 1965. But well into the 21st century, most providers only trusted computers to send out the bills.
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Obama’s Proposals For Medicare — Do They Go Far Enough? Will They Become Law?

Not long ago, I wrote about the Center for American Progress’ (CAP’s) “Senior Protection Plan” —a report that aims to rein in Medicare “by $385 billion over ten years without harming beneficiaries.” In that post, I suggested that CAP’s proposals might well give us a preview of the “modest adjustments” that President Obama had said he would be willing to make to Medicare.  At the time, I highlighted three of CAP’s recommendations:

– increase premiums for the wealthiest 10% of Medicare beneficiaries (raising $25 billion);

– insist that drug-makers extend Medicaid rebates to low-income Medicare beneficiaries (saving $137.4 billion);

– prohibit “pay for delay” agreements that let “brand-name drug manufacturers pay generic drug manufacturers to keep generics off the market” (saving $5 billion).

Last week, in his State of the Union address, President Obama embraced the first two:  “Already, the Affordable Care Act is helping to slow the growth of health care costs,” he noted. “The reforms I’m proposing go even further. We’ll reduce taxpayer subsidies to prescription drug companies and ask more from the wealthiest seniors.”  (In time, I suspect that the administration also will call for a ban on those decidedly seamy “pay for delay” deals.)

“On Medicare,” he added, “I’m prepared to enact reforms that will achieve the same amount of health care savings by the beginning of the next decade as the reforms proposed by the bipartisan Simpson-Bowles commission.” The commission called for reducing Medicare spending by roughly $350 billion over 10 years–  a sum that is not far from CAP’s $385 billion target.

Are These “Adjustments” Too Modest ?

These may seem like small numbers. But keep in mind that this is on top of the $950 billion that the Affordable Care Act (ACA) saves by squeezing waste out of health care spending, while simultaneously raising new revenues. Of that $950 billion, some $350 billion comes in the form of Medicare savings achieved by:

–  Pruning over-payments to private sector Medicare Advantage insurers– $132 billion  

–  Containing Medicare inflation by shaving annual “updates” in  payments to hospitals and other large facilities by 1% a year for ten years, beginning in 2014– $196 billion

– Cutting disproportionate share hospital payments to hospitals that care for a disproportionate share of poor and uninsured patients over 10 years beginning in 2014 – $22 billion.

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The Empowered Patient

When you or a loved one enters a hospital, it is easy to feel powerless. The hospital has its own protocols and procedures. It is a “system” and now you find yourself part of that system.

The people around you want to help, but they are busy—extraordinarily busy. Nurses are multi-tasking. Residents are doing their best to learn on the job. Doctors are trying to supervise residents, care for patients, follow up on lab results, enter notes in patients’ medical records and consult with a dozen other doctors.

Whether you are the patient or a patient advocate trying to help a loved one through the process, you are likely to feel intimated—and scared.

Hospitals can be dangerous places, in part because doctors and  nurses are fallible human beings, but largely because the “systems” in our hospitals just aren’t very efficient.  In the vast majority of this nation’s  hospitals, a hectic workplace undermines the productivity of  nurses and doctors who dearlly want to provide coordinated patient-centered care.

At this point, many hospitals understand  that they must streamline and redesign how care is delivered and how information is shared so that doctors and nurses can work together as teams. But this  will take time. In the meantime, patients and their advocates can help improve patient safety.

Julia Hallisy’s Story

Julia Hallisy learned about patient safety the hard way. Hallisy’s daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation.

“My husband and I spent years of our lives in hospital hallways, waiting rooms, and emergency rooms,” Hallisy recalls. “We became savvier and more educated the longer my daughter’s illness went on. . . .

“We slowly came to realize that the quality of healthcare she was receiving, as mediocre as it sometimes was, was actually far superior to the care other families around us in the hospital were receiving. They began to notice this discrepancy as well, and they wanted to know how we knew the things we did and who had given us such valuable ‘inside’ information. We had to explain to them that we had come across everything we knew . . . by watching our daughter suffer through medical errors, misdiagnoses and inexperienced medical providers, and investigating the mistakes and taking steps to make sure they didn’t occur again.”

Kate was treated at some of the finest hospitals in the San Francisco area.

She died in 2000. Kate was eleven years old

                             Empowering a Patient,  an Advocate, or a  Survivor

How could a mother handle such unspeakable grief? Hallisdecided to write a book that might help others. In 2008,  I reviewed it on HealthBeat.

At the time I wrote: “Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient’s advocate needs to know about how to stay safe in a hospital.”

Recently, Hallisy emailed to tell me know that the book has now become a non-profit foundation: The Empowered Patient Coalition.

Go to their website and you will find fact sheets, checklists, and publications including, A Hospital Guide for Patients and Families that you can download at no charge. I found the Hospital Guide eye-opening. I have read and written a fair amount about patient safety in hospitals, but it told me many things that I did not  know.

For instance, did you realize that it is perfectly appropriate to ask your surgeon how many times he has performed this particular operation?

Are you aware that you (or your advocate) can—and should—read your medical records while you are in the hospital? (This may be the only way you will find out that your doctors disagree with each other about your treatment.)

Do you know what to do if you if you request a consultation with a more experienced physician because you have serious questions about the decisions made by residents –and hospital staff don’t agree that you need to talk to someone higher up on the ladder?

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