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Hurricanes, health records and you

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 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. 

Below the level of the VA and Kaiser, some medium-sized health and hospital networks have also done impressive work.

Joshua Taustein, IL: About one thousand physicians in Evanston Northwestern Healthcare in Illinois use electronic patient records for over 300,000 patients.  There are no paper charts and all orders are placed by physicians through the computer system.  ENH also has a Web site that allows for direct scheduling of appointments, secure messaging with physicians, renewals of prescriptions and reviewing medical records and test results.Bruce Cunha RN MS, Marshfield WI: The Marshfield Clinic is a physician-owned medical system of 43 clinics in Wisconsin, using an electronic patient record system for over 10 years. We are about to open a new clinic that will be paperless; the physicians all have tablet computers that allow them to receive and send information directly into the patient electronic record. On the Web, patients can make appointments, check on lab and other test results and view some of their medical records. Our clinics are all linked together so a patient being seen at one center can have her record, lab results and even digital x-rays viewed by a specialist at another center. If needed, we also have a video system where a specialist can talk and see a patient who is in another center.

Perhaps the smallest, fully computerized office I heard from was that of Allen Wenner, a family practice physician in Lexington, South Carolina, whose homepage seems like a model of a patient-friendly interface. But Dr. Wenner points out that just computerizing one’s own practice really isn’t enough:

The problem we have is with everyone else: 1) we cannot get electronic data from our hospital despite elucidating errors and requests for 6 years; 2) other physicians will not communicate digitally with us, let alone patients; 3) we continue to get reams of paper from pharmacies, home health agencies, and consultants.I give lectures about technology to my colleagues, but few listen. The change required is too great. Sadly, it will be the next generation of doctors before most patients see your future vision for health care unless patients revolt and demand better care. Perhaps the reason healthcare won't change is the reimbursement system ... nobody pays for quality or efficiency in health care.Mark McKee, Albuquerque, NM: Here's one baby step that all doctors could take; e-mail.  My doctor has e-mail. Now, are you sitting down?  He shares his e-mail address with his patients!  And he actually checks it twice a day!  If we aren't feeling well or have an existing condition that pops up, we can e-mail him and he responds with something we can try at home, or tells us to make an appointment. If there is a scheduling or prescription mistake, we e-mail him and he takes action. Whenever there is a new report or article that relates to a condition or a medication we may be taking, we can e-mail him the link to the article. Needless to say he stopped taking new patients a few years ago, because frankly, he's a wonderful doctor who avails himself of the latest technology, yet interacts with his patients like an old country doctor.

To balance the positive responses, however, came numerous emails — mostly from physicians — explaining why extensive computerization wasn’t a practical option for them. Although there were many variations, most of it came down to the observation that the system itself is so broken that changing only the technology isn’t practical.

Jeffrey Kaplan, M.D. Bridgeport, Connecticut: Your article sounds wonderful. However, in a time with decreasing reimbursements, increasing overhead and malpractice costs, how could the average physician afford to foot the bill for this technology as well? Our fees are fixed, or in most cases even dropping, and we fight HMO's to be reimbursed. We need more staff to get paid by insurance companies. It's not fair to compare doctor's offices with other industries that do not have the same constraints. When was the last time you told the clerk at Wal-Mart to go to an insurance company to get their payment for goods you bought?

But other readers thought that there might be ways to press physicians to computerize:

Greg Larkin MD: I fully agree with this desperate need. Ironically, many MD practices want 'someone else’ to pay for the establishment of electronic records. Why? Because no payer differentiates between those with electronic medical records and those without, so there’s no financial incentive to invest. (Granted, EMRs are safer for the patient ... wonder who first paid for sterilizers in surgery?)Anyway, MDs are a competitive group, so one way to push the agenda is for payers to require an array of quality performance data from their providers. Better quality would equal better pay. In order to capture such data, either the physicians would have to review each hand-written chart individually, or else use an EMR application that would generate such automatically. Additionally, it would be of interest if a major publication would periodically publish a 'score card' of those communities who are progressing towards EMRs and those who are not. Robert DeFazio, Buena Park, CA: The medical industry doesn't feel much pain if it doesn't modernize. It simply increases prices, collects from insurance, and demands the remainder from the client. The propellant for the kind of ramping up you discussed is something that the industry is loathe to do, i.e. publish cost comparisons matched with their competencies as well as listings of complaints (both professional and financial). Right now, there is no practical way that an individual can select a doctor based on any of the above other than to go down an alphabetical list of doctors in the phonebook. There is no real sense of competition.

And then there other concerns about what issues that computerization might cause:

J. Schreier, Naples, FL: Excellent idea, except for a problem: One can change computer records at any time without leaving any trace of the changes. In a case of alleged malpractice, altered records (and missing X-rays) give the case to the plaintiff or complainer. Is there a proposal for securing computerized medical records so that alterations after the fact will be as evident as they are with today's paper records?

Rogers replies: I’m sure that paper records and physical X-rays have been “disappeared” by unethical practitioners in the past. In fact, electronic record-keeping may be more unforgiving — look at how many of the recent financial scandals have been prosecuted on the basis of email. (Indeed, one anonymous physician wrote in to suggest that one argument against EMRs was that it would inspire fishing expeditions by malpractice attorneys.)

Brian Hall, M.D. San Antonio, TX: While the overall thrust of the story about the need for modernization of medical care (particularly with regard to medical records) is correct, a key point is missing. The process is much more complicated than it might seem. Most systems are designed by non-physicians who don't really understand the medical care process — for example, it is easy to jot notes while talking with a patient, but not so easy to type or to speak into a computer microphone. Much of the "trillions of dollars of savings" that you blithely claim can easily vanish in the inefficiency of a poorly conceived overhaul of medical care, especially a top-down effort.

Rogers replies: There’s no doubt that these systems need to be properly designed, but from what I’ve seen, a number of companies — all employing plenty of physician input — have made great progress. If we can make computers work for police officers or astronauts, we can probably do it for physicians as well. And here’s a final reminder that the reward is more than just monetary:

Wolfgang Beumer, Los Angeles, CA: From my vantage point as a 3rd year medical student, having just started rotating through the hospital, the thing that has astonished me most thus far is the inordinate amount of time wasted on filling out redundant information on form after form. Incorporating decentralized information into our own records also costs us a great deal of time. I think that the greatest benefit of computerization will be increased time for patient-physician interaction.