DC WIRE

PAPER CHASE
By Robert Goldberg, PhD
You know the $2 trillion in savings that President Obama is banking on from “providers” to pay for universal healthcare? Don’t bet on that materializing over 10 years as promised by lobbyists for these groups. Apart from the fact that the plan for achieving this is about as vague as the future of some of the participants on Celebrity Rehab, all their strategies hinge on adoption of something known as health IT, otherwise known as paper.
Paper is what you sign to let your doctor know that you’re aware they’re making copies of other pieces of paper, the same pieces of paper that you filled out when you were in the office last time. You sign that piece of paper each and every time you go to the doctor or the hospital or watch Grey’s Anatomy. That’s what is known as privacy under something known as HIPAA, short for HIPAA, since no one quite remembers what HIPAA stands for anymore except that it was designed to protect the privacy of medical records and make health insurance more portable.

Still More Forms
So now we are going to spend $20 billion—most of which will go to pay doctors to install computers to collect most of the papers that you and I filled out each and every time we saw them or went to the hospital. Most of them, but not all. We will still have to fill out those pieces of paper letting the doctors know that we are aware they are collecting what was once on pieces of paper but is now going into computers.
Well, we may have to sign more than one piece of paper. That’s because a new privacy law allows certain health information to be shared if it is not fully de-identified for a broadly defined range of research purposes that run the gamut from figuring out what treatments work best for which patients to medical underwriting or marketing. What HIPAA law defines as “limited data sets” can include such information as dates—including those for the patient’s birth, admission, treatment, discharge, and payment history—as well as geographical locators such as city, state, and ZIP codes—to stay with the patients’ records. With all that info, who needs Jack Bauer? So expect privacy “advocates” to press for yet another form to fill out.

Personal Info
On the one hand, the privacy concerns of the privacy lobby have been overblown. The value of hacking into my medical records and learning about my hip replacement and cholesterol levels is less valuable and interesting (except for health researchers) than what movies I download, how much I spend or where I shop, information that is way more personal in many respects. And a recent study by the Institute of Medicine noted that applying the HIPAA requirements of asking for consent each and every time to clinical research—particularly in an era when genetic material needs to be shared and integrated—has added a huge amount of time and money to the cost of innovation and translating advances into patient benefits.
On the other, “stakeholders” had a decade to address many of these issues, including the process of encryption of data in use and destruction of personal data no longer shared. These are techniques that both of my kids have used to keep me clueless about their real lives (along with blocking me from their Facebook pages).

Personalized Therapies
Aggregating information in a de-identified manner, analyzing it, and then applying the insights to develop a personalized approach to care is the path to improving treatment and the platform for prospective medicine. We want our information to be anonymous and shared, not private and isolated. If we are still filling out a piece of paper every time we get a checkup 10 years from now, chances are we will have made little progress in improving the quality of healthcare. Or else the paper industry has taken over the practice of medicine.

Robert Goldberg is co-founder and vice president of the Center for Medicine in the Public Interest (cmpi.org), a nonpartisan research and educational organization focused on patient-centered healthcare. He blogs at www.drugwonks.com and welcomes comments there.

The views of the author are his own and are not necessarily those of the publishers of PM360.

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