A Worldwide Web of Personal Health Records

Neurology Now
May/June 2006
Volume 2(3)
p 36–37
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Several years ago, when Aaron Walbert began complaining of headaches and nausea while on vacation in northern Minnesota, his mother worried that his shunt might have malfunctioned. Renee Walbert recognized those warning signs because her son, who developed hydrocephalus from a stroke when he was three days old, had already undergone 28 shunt surgeries to drain the excessive cerebrospinal fluid. Aaron had to be taken to a hospital in Duluth, two hours away, only to learn his chart couldn't be retrieved from medical records at his home hospital. He was then sent to another center in the Twin Cities, an additional 31/2 hours away, so that the difficult call regarding surgery could be deferred to a neurosurgeon.

After that experience, Renee Walbert began to lug around heavy envelopes of radiology films wherever they traveled because “shunts can fail at any time.”

But by the time the family went to Disney World this March, packing that extra baggage was no longer necessary. Aaron, now 15 years old, can access his health records anywhere in the world at the click of a computer mouse.

“Before we put Aaron's medical information online, trying to get medical care while away could be so frustrating,” Renee says. “Now that we are using a personal health record [from www.MyHIN.org ], if Aaron were to get sick, we would just go to the nearest hospital and ask them to download his latest MRI scan for comparison.”

The Walberts are among approximately one million users of personal health records (PHRs) in the United States, according to C. Peter Waegemann, CEO of the Medical Records Institute. But that's just for starters. “With large organizations planning to give these out to patients in the near future,” he says, “we can expect this number will soon reach three million.”

Many experts predict that as standards are developed to make sharing of electronic information with doctors easier and safer, PHRs will likely become quite common. Most PHRs are stored on secure servers by specialized companies and are password-protected to ensure confidentiality.

For the chronically ill, having up-to-date medical information on hand anywhere can be a godsend. And for all of us, the more we know about our medical history, the better our care is likely to be.

Here's what PHRs can help us do:

ACCESS YOUR HEALTH RECORDS ANYTIME, ANYPLACE

Storing health records in a secure computerized form gives you the confidence of knowing that your information can be brought to any provider, at any time. Having a prior brain scan online or on a computer storage device, for example, helps some patients avoid unnecessary hospital admissions if they get sick on the road. Repeating tests is not only inconvenient and time-consuming, but costly.

With Aaron Walbert, there had also been many false alarms because everything from the flu to a poor night's sleep could mimic shunt failure. The Walbert home in Colorado Springs is a 90-minute drive from Children's Hospital in Denver, where his doctors are located. So when Aaron became sick a couple of years ago, instead of making the long drive, Renee took him to a local radiology office for a brain scan and had it compared to the most recent scan downloaded from his online PHR. When it was read as unchanged, Renee could take her son home without worry.

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KEEP BETTER TRACK OF MEDICATIONS, DOSAGES AND DRUG ALLERGIES

Most PHRs provide a mechanism for you to update medication changes, dosages and schedules. Some offer a service that calls your pager or cell phone to remind you to take your scheduled pill. Many can check whether your current medications interact with each other and what foods to avoid when on certain drugs.

Melissa Lallak uses CapMed (www.CapMedPHR.com ) to keep medication information current for her son, Benjamin, who has cerebral palsy and whose medications often change. His neurologist once suggested trying a medication to reduce Benjamin's dystonia, but was able to check only the most recent volume of his paper chart. Because the name sounded familiar, Melissa accessed her son's PHR to find that he had previously failed the same drug — and she was able to tell the doctor which dosage was used as well as when and why it was discontinued.

“It's always a benefit when the parent is more organized than the healthcare system,” she says.

KEEP YOUR RECORDS ALWAYS UP-TO-DATE

Although we live in the Information Age where we view everything from bank statements to phone bills online, our most critical data is not always available because it's somewhere else on paper or film. In doctors' offices and hospitals alike, medical charts can be lost or misfiled, and delays in copying and sending records to other physicians are common.

Lucy Gutierrez uses a PHR for her daughter, Sara, so that she can always have the most current data available for office visits. “I have the complete database of history and medical events,” Lucy says, “so I don't need to depend on my primary care physician to transfer records to her other doctors or provide them with the latest information related to Sara's health.”

COMMUNICATE WITH YOUR DOCTOR'S OFFICE

It's often frustrating to call your doctor for a routine request — refill, appointment, referral — only to get a busy signal or play phone tag. Some PHR systems, such as Patient Gateway used by Partners HealthCare in Boston, allow you to ask questions 24–7. Patients use it to schedule or cancel appointments, get medications refilled, and send short messages to their doctors. Instead of keeping patients waiting on hold, responses come back to electronic mailboxes.

“I make all my appointments and get my referrals this way,” says Daniel Brian Hoch, M.D., Ph.D., assistant professor of neurology at Massachusetts General Hospital. As director of the largest online discussion forum for neurology patients, Brain Talk Communities (www.braintalk.org ), Dr. Hoch is committed to empowering patients with technology to improve their healthcare.

“Even people who don't regularly use computers can handle it,” Melissa Lallak points out. “So much of healthcare is based on communication — the ability to do it easily just gives your kid a better life.”

GET INFORMATION ON YOUR SPECIFIC HEALTH ISSUE

PHRs often include links to disease information tailored to specific health concerns. The WebMD Health Manager (http://healthmanager.webmd.com ), for example, can send you personalized news alerts and updates relating to particular neurological disorders as well as other medical conditions.

BECOME AN ACTIVE PARTICIPANT IN YOUR HEALTHCARE

Many consumer advocacy groups and government leaders understand that optimal healthcare is achieved through a partnership between physicians and patients.

David J. Brailer, M.D., Ph.D., National Coordinator for Health Information Technology, would like to see more responsibility for care awarded to consumers. Just as physicians are making greater use of electronic health records, so too is Dr. Brailer encouraging consumers to manage their own care through personal health records.

He is impressed by PHR technology but concerned about a lack of standards — basic attributes that each PHR should have. To facilitate the exchange of electronic records between patient and physician, software systems need to speak the same language. “We have just budgeted funds to develop a strategy for bringing PHRs into the standards effort,” Dr. Brailer says.

Dr. Hoch hopes that we are moving beyond the limitations of face-to-face doctor visits into an era in which consumers demand more involvement. He would like his own PHR as well as others to provide patients with interactive features so that they communicate information for multiple providers.

“Records,” he says, “should belong to patients — not doctors.”

MY MEDICAL RECORDS CHECKLIST

□ Contact information

□ Current physicians

□ Medical conditions & health problems

□ Medication lists

□ Allergies

□ Test results

□ Images of tests, X-rays & scans

□ Immunization history

□ Emergency information card

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