Who'd have thought it? Patients are putting their records online

And that can be a boon for you—though some dotors and the lay public voice major caveats.

Doctors and the Web

Who'd have thought it?
Patients are putting their records online

Jump to:Choose article section... Can you trust patients to record accurate information? Security concerns appear to be legitimate Systems for two-way communication with patients Comparing online medical history services


And that can be a boon for you— though some doctors and the lay public voice major caveats.

By Deborah Grandinetti

This is the second in a monthly series looking at how the Internet is changing physicians' professional lives. Last month's kick-off article (Mar. 6, 2000) detailed how you can help patients navigate the Internet for health information. Future installments will look at such topics as Web-based electronic medical records; services that electronically connect doctors with health plans, hospitals, and other providers; online sources of medical supplies; and online pharmacies.

Among the latest dotcom ventures are systems that make it possible for your patients to create and store their own medical histories online. At the moment, you won't find many patients who've signed up: The services are new, and patients have privacy concerns. But you may find that taking the time to introduce the technology to some of your patients will pay off.

Patient-generated, online histories could eliminate some of the headaches involved in managing the care of the chronically ill. If a patient has an online record and gives you his access code, you'll be able to see at a glance what his specialists are up to—even if they haven't gotten around to sending you up-to-date progress notes. You'll also be able to see what medications he's taking and track clinical indicators like weight and blood sugar levels.

To see how patient-generated online records could benefit you, take the example of a 40-year-old patient with congestive cardiomyopathy. Among the specialists who care for him are a cardiologist, a pulmonologist, and a renal specialist. His drug regimen changes constantly. You could go through the drill at the beginning of each visit to find out what medications he's taking now. Or you could follow the lead of Evanston, IL, internist Sam J. Sugar and get the patient to maintain his own online record. That way, you could glance at the patient's online medical history when he visits you, dispense with the minutiae, and get down to what's important.

For Sugar, persuading this patient to subscribe to an Internet record service wasn't a stretch—it was a sales job. Sugar sidelines as president of 4HealthyLife.com, an online medical records service that enables individuals to maintain their records on the Web. Patients are issued an emergency ID card, and they choose a password they can share with physicians and other health professionals.

Sugar knows personally how handy that ID card can be. Not long ago, he had to be readmitted to the hospital with severe abdominal pain following surgery the previous week. "I was in agony, and was just about to be given narcotics, when a nurse walked in and said the attending would have to take a complete history, because no one was in the records department at 5:30 on a Saturday afternoon," he says. Instead, Sugar gave the nurse his ID card and password and told her how to retrieve his information on the Internet. "Ten minutes later, the nurse walked in and said, 'This is really cool,' " he recalls. Sugar was given the painkillers without a needless delay.

Online patient-generated records can also be convenient when you care for elderly patients whose adult children want to keep tabs on their care. Let's say that octogenarian Betty Jones creates a record and agrees to give her son access to it. Her son can consult the record first when questions arise about Mom's medications. Even if he has to call you, he'll be better informed.

San Francisco geriatrician Forrest S. Martin, medical director for an online chart service called MedicalRecord.com, says he finds patient-generated records to be convenient when referring patients to specialists. "This way, you don't have to send crummy copies of written notes," he says. "You can send the patient to the consultant with an e-mail message saying, 'Download this patient's history.' That takes seconds, as opposed to the time it takes to write a long consultation note and make copies of the record."

Online patient records can also benefit travelers who have a medical emergency on the road. People who can give emergency room staffers Internet access to their medical history are 30 minutes closer to getting care, says Sugar. "As soon as the patient hands them her emergency card, she's no longer Jane Doe. Now she's a person with a name, an insurance card, a Social Security number, and a medical history that lists her specific allergies."

Can you trust patients to record accurate information?

Patient-generated records will undoubtedly contain errors of fact and interpretation. "You're going to have those patients who tell you they're allergic to antibiotics, because they got a yeast infection after taking them," says Martin. "On the other hand, even when the doctor takes the history in his office, patients don't always get the details right. And, with an online history, you'll be able to look at a clean, well-organized medical record."

Provided the service does a good job of extracting and organizing information (many of the templates are designed by practicing primary care physicians), the online medical history that a patient creates is "probably better than the paper charts in a physician's office," claims Sugar. "When a patient switches to me from another physician and brings me copies of his old records, they're uniformly useless. Either I can't read the writing, or they weren't copied right, or they're too voluminous to review. And if the patient is on a prescription medication and has stopped taking it, or the dose has been doubled, that information almost never makes it into the chart."

That claim doesn't wash with FP Richard E. Waltman of Tacoma, WA, who says that the medical records he sees tend to be typed and in a standard format. Waltman doesn't think he'd spend much time with a patient-generated record, and Malibu, CA, family physician Gil Solomon agrees. "I don't think patients could organize and select information in a manner that's understandable to health professionals," he says. "Some physicians can't even do it in a way that's understandable to other health professionals."

But West Columbia, SC, family physician Allen R. Wenner, who designs some of the software used by online medical records companies, insists that the day is coming when the patient's record will be better than the physician's. "Wait until doctors see the next generation of patient-generated records," he says. "I guarantee it will knock some of them off their stools. I'm designing the records systems so that patient-entered information looks like doctors' own medical records.

"Patients have to take responsibility for maintaining their own medical records, because their care is so fragmented among providers," adds Wenner. "And manufacturers of EMRs and patient-created record systems need to create interfaces between these different records so that everyone has access to them."

In the meantime, some physicians are using various electronic messaging systems, some incorporating data in their EMRs. These allow patients and doctors to share their contributions to the medical record (see below).

Security concerns appear to be legitimate

The most enthusiastic users of online medical histories are senior citizens with chronic illnesses and mothers who want to keep their family health records in one place, says G. Edward Kriese, president and CEO of MedicalRecord.com. But, overall, vendors have found that online records are a tough sell—and you may find that's true with your patients, too.

What's keeping people away is concerns about privacy. That's why FP Forrest Martin can't even get his own mother to use an online record, even though she has plenty of Internet savvy, and he helped design MedicalRecord.com's intake form.

Fears about privacy on the Internet are legitimate. A recent survey by the California HealthCare Foundation found that 18 of 21 health-related sites it reviewed use "cookies," which enable a Web site to know when a user has visited the site, and to create a profile of that user over time. The authors concluded that "most Web sites require users to forgo privacy in order to take advantage of the services being offered," and that the overwhelming majority of sites do not extend their privacy policies to business partners and third parties (such as ad networks).

The survey didn't look at online medical records companies specifically, and all online EMR companies declare in their privacy-policy statements that they will not disclose personally identifiable information to third parties. What's more, the companies provide one or more layers of technology to keep the information private. But those firewalls don't always work.

Again, the main problem is that site advertisers can use cookies and other technology to track information about the reading and shopping habits of anyone who visits that site. Even if the medical records service has no advertisers, you're still being asked to take its owners at their word that they won't sell your private information.

The good news is that there are steps patients can take to turn cookies off and block other privacy-invasive technology. Doctors can direct patients to Junkbusters (www.junkbusters.com), a privacy advocacy group that offers an array of tips for safeguarding privacy on the Web.

Most online medical records services will also provide users with an audit trail—a listing of who tried to access their Web site, when, and why. Sugar's company looks for hackers, and when it appears that an unauthorized user is trying to access a site, the company sends the patient an instant e-mail alert so he can change his password immediately. WellMed, a consumer health management site that also includes a patient-history service, tries to verify the legitimacy of physicians or other health care personnel who call for permission to access patient data.

For patients who are very skittish about security, there's CapMed's "Personal Health Record," software designed to be used on a patient's home computer. The fact that it is not Internet-based resolves the security question, but at a price. Customers who choose this option won't have access to their records away from home, unless they carry the printouts with them.

Security issues notwithstanding, patients who travel frequently, have a chronic illness, or are under the care of several physicians can benefit from online medical records. Before you broach the idea with your patients, review the various services yourself to see if there's one you'd feel comfortable recommending. Our table below summarizes the features of half a dozen of these services.

"It's likely that all medical records will be online in the next five years," says Martin. Tom Ferguson of Austin, TX, a former community-health physician who now specializes in consumer health informatics, agrees. "I think we will see multiple versions of the medical history—one controlled by the patient, another by the physician, another by the hospital. The patient may be able to download a copy of the hospital or physician record into his or her system, although he may not have input into them. But I would guess that the definitive record will be the one the patient owns and controls."

For now, the main benefit for physicians may be convenience. "My dream patient," says Martin, "is the one who comes in and says, 'Put down your pencil, Doctor—here's your history.' "

Systems for two-way communication with patients

As the accompanying article explains, patient-generated, online medical histories can save you time during office visits and supplement the information in your own patient charts. But they're a step below the more advanced, Web-based systems that let you access records and communicate with patients around the clock. There are already a number of such systems on the market, each with a different twist. Here's a look at three of them.

• The most established systems come from MedicaLogic in Hillsboro, OR. Two of its systems are Logician, a full electronic medical record, and Logician Internet, which has some of the features of an EMR, including the ability to document patient encounters electronically. In March, MedicaLogic launched 98.6, an Internet-based system designed for patients of doctors who use Logician Internet. (A later version will be available to patients whose doctors use Logician.)

With 98.6, patients can create their own personal medical record and review the information in their doctor's Logician Internet record, such as symptoms, conditions, treatment plans, and current prescriptions. Patients will also be able to request prescription refills, read relevant health news, and use the search function to do online research. This is the only major EMR supplier that enables physicians to share clinical data with patients online.

•Healinx of Alameda, CA, offers an electronic messaging system with some of the same features. Patients can use the system to access a physician-created medical profile online, request prescription refills and referrals to specialists, and schedule appointments. When the patient sends a message asking to replenish a prescription, for instance, the physician can pull up the patient's profile, screen for drug interactions, order the refill online, and reply electronically to the patient. The system makes it easy for physicians to charge for their online advice, if they want. It also provides the patient with a record that can be pulled up by an ER or out-of-town physician.

•MediVation of Needham, MA, offers a patient-physician communications system that creates a personalized Web page for each patient. The content is tailored to each patient's condition, which is gleaned from information the practice has entered into its appointment, billing, and/or medical record systems. By referencing that information, MediVation fills the patient's page with personalized patient education material, including articles and books recommended by the doctor, the date and time of upcoming appointments, and any instructions related to them. Patients can also use the system to make appointments, renew and track prescriptions, and ask their doctor questions.

FP Roy M. Nakamura of Brunswick, ME, finds online communication with patients much more efficient than traditional phone communication. "I hear from patients who otherwise wouldn't contact me," he says. Since his primary care group, Martin's Point Health Care, started using MediVation's interactive, Internet-based service, Nakamura has received an average of three to five communications from patients a day.

A major benefit of online communication, says Nakamura, is that it can provide him with timely information even when specialists don't. "I have one patient with significant medical problems, including a renal tumor and uncontrolled hypertension," he says. "She's seeing a number of specialists, and she updates me weekly about her care, including her medication changes." He says she feels more comfortable knowing that at least one physician is looking at the big picture and making sure that the overall plan of care is helpful.

Comparing online medical history services

Web site4HealthyLife.comCapMed's Personal Health RecordHealthMagic's Lifelong Health Record
Web address
Cost$24.95 annually for individuals, $34.95 for families$24.95 one-time fee to download software from the company's Web site; $34.95 for CD-ROM; Enhancements are freeAvailable to sponsoring organizations for $1.20 per member per year, rather than directly to individuals
Emergency ID cardYesNot on the software version,which stores the record on the patient's home computer; the Internet version, PHR Anywhere, is due out in JulyYes
Health assessmentYesNoYes
Health newsYesNoYes
Search functionYes, for articles in its newsletterYesYes
Pre-visit symptomNoPendingYes
Drug databaseProvides links to drug databasesNoYes

Medical dictionary

Provides links to severalNoNo
Web siteMedicalRecord.comPersonalMD.comWellMed's WellRecord
Web address
CostFree (ad-sponsored)Free; revenue is drawn from advertisers, sales to managed care companies, and business partnershipsFree (ad-sponsored)
Emergency ID cardYes—either wallet card or imprinted braceletYesYes
Health assessmentNoYesYes
Health newsYesYesYes
Search functionNoYesYes
Pre-visit symptomNoNoPending
Drug databaseNoYesYes

Medical dictionary



Deborah Grandinetti. Who’d have thought it? Patients are putting their records online. Medical Economics 2000;7:93.