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Living Well
A Worldwide Web of
Personal Health Records
By Orly Avitzur, M.D.
everal 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 3 1/2
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.
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“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 passwordprotected 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
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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.
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.
PHOTO ILLUSTRATION BY DANIELLE RIVERS
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
✁
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
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
NN
patients — not doctors.”
Dr. Orly Avitzur is a neurologist in private practice who holds academic appointments at Yale
University School of Medicine and New York
Medical College.
For more information about
personal health records, see
RESOURCE CENTRAL on page 46.
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