Hurricanes, health records and you

Michael Rogers Columnist • Profile • E-mail

Last week's column, "Physician, wire thyself," on the crucial need for computerization in the health care industry was dramatically underscored by the aftermath of Hurricane Katrina. More than a million Gulf Coast residents suddenly found themselves without any access to their medical records or prescriptions. And with Hurricane Rita bearing down, more people could soon find themselves in the same situation.

For the healthy, this may seem like the least of a homeless hurricane victim’s worries — but for the chronically ill, it can be fatal. In the wake of Katrina, the federal government responded by beginning to collect pharmacy, Medicaid, Veterans Administration and other medical information for a centralized database that doctors can use as they treat displaced patients. But enormous amounts of patient information will still be permanently lost.

How can you prepare for a similar crisis? Your doctor may already keep an electronic medical record for you — and if so, you are entitled to a copy. Or you can get your paper records and put one together yourself. In either case, the bigger question becomes: Where do you keep it? As Katrina made clear, the answer is not in your basement.

The solution is the Internet, in the form of a number of new sites that help organize and maintain personal health records. (In general, when doctors and hospitals have your records they’re called electronic medical records, or EMRs, but once you have them, they’re called personal health records, or PHRs.)

The American Medical Association’s iHealthRecord.org coordinates with more than 100,000 doctors’ own Web sites; if your physician is one of them, that’s a logical choice. WebMD’s Health Manager offers storage along with many interactive features and tests. FollowMe is a five-year-old service that also allows groups — employers or hospitals — to offer PHRs as a service to customers or employees. All these sites, of course, emphasize high security standards: You control access to your records.

The ultimate solution may be that provided by a service called VeriMed. As do the other providers, VeriMed stores your PHR online — but then also provides a tiny chip that is implanted, usually under the skin of your upper arm, containing a unique 16 digit number.

Even if you are unconscious, a VeriMed scanner can read that number from your chip and locate your health records online. VeriMed offers the scanners to hospital emergency rooms for free.

A sizeable number of patients have chronic ailments that could easily land them unconscious in emergency rooms; only time will tell whether squeamishness over implanted chips (the process itself is quick and almost painless) will block this otherwise rather sensible solution.

What you said
Even without Katrina, last week’s column itself brought a barrage of e-mail. While healthcare has slipped off the national political agenda for the moment, it’s clear that it still taps a deep well of unhappiness and anger — for both patients and physicians.

Every medical story needs a dramatic patient anecdote, and Andrew James Riemer of Saint Paul, Minn., provides ours:

Two years ago my wife and I were very concerned about one of our sons, who developed a high fever that just wouldn't go away. The initial doctor visit didn't find anything, so they recommended that we control the fever and that we monitor how he felt. While taking ibuprofen and acetaminophen in concert, his fever would drop and he would act fine, but as the doses would wear off it would spike high again. He also developed a rash, but we had seen lots of rashes alongside fevers.

We fought that fever day after day and five days, took him back in to our doctor's office. Our regular physician was unavailable, so we saw one of his younger counterparts. After reviewing the file from the earlier visit, and asking a few questions, this doctor pulled out a PDA and started making selections as he continued with his questions. In just a few moments, he stated he had a possible diagnosis, but that he needed to confer with a colleague.

Our son had Kawasaki's Disease. It is very uncommon and, thankfully, was easily treatable in its early stages. This younger doctor had used an electronic medical reference tool to search for diseases that matched our son's symptom profile. It was a disease none of the other physicians had personally encountered, although the senior physician was able to confirm his colleague's diagnosis. Our son was in the hospital receiving intravenous treatment that very day. Untreated, Kawasaki's Disease can lead to hear aneurysms later in life. Without that physician's use of technology, it may have been many more days before our son's symptoms were tied to Kawasaki's Disease.  Those extra days could have cost him his long-term cardiac health. One simple device made a huge impact in the life of our family. Just imagine how much greater the impact will be when such technologies and others are made broadly available!

In the column I mentioned that advanced computer systems were already in place at scattered institutions around the U.S. Here’s a quick Web tour of some highlights:

The U.S. Veteran’s Administration has fully computerized patient records and is one of the rare examples of a government agency that seems to have gotten ahead of the curve; they are now implementing an extensive telehealth program to provide daily care within patients’ homes. A number of readers — both patients and workers at the VA — wondered why this huge agency isn’t used as a model for the rest of U.S. healthcare information technology.

In the private sector, California’s Kaiser Permanente, a massive HMO, is also thoroughly computerized and is now rolling out extensive patient interaction on the Web. Kaiser uses software from Epic Systems, a Wisconsin-based company whose technology is some of the most widely used in the U.S. today. 

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