YOU know how it is. You go in for a check-up and the doctor says your blood
pressure is “fine”. What does fine mean, you ask, and he tells you not to worry.
You have your gall bladder out and the doctor calls it “textbook”. You ask which
one, so you can read up on the condition, and he chuckles appreciatively. All
your various complaints are dismissed as “normal”, so you never bother to learn
the difference between bilirubin and a biorhythm.
Then you turn 40, move to a new town and develop a mysterious liver problem.
Your new doctor asks about your medical history. Suddenly it dawns on you that
to all intents and purposes, that history has been lost. Doctors’ notes are
almost never passed on and hospitals seldom share records, so all you really
have is what you remember. And one thing you do know is that your memory is
useless.
If only you had a way of keeping your own records so you could lay your hands
on them whenever, and wherever, you needed to. But the arduous task of
chronicling everything that happens to your body and deciphering the secret
scribblings of the medical profession is rather off-putting.
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Enter Peter Szolovits, a computer scientist at MIT. Szolovits is designing a
personal electronic companion that would manage your medical history from cradle
to grave. What’s more, it would belong to you, not your doctor. The way things
are now, Szolovits says, the patient is at the mercy of the physician. “We
wanted it to be the other way round.”
But unifying records and putting them into the hands of the patient is only
the beginning of Szolovits’s grand idea. What he ultimately envisions is an
intelligent system that not only stores information, but actively collects it,
interprets it, alerts you to possible dangers and even draws your attention to
the latest medical research. Not only that, it would get to know your
preferences, help schedule appointments, and give friendly advice. So it’s
rather apt that Szolovits calls it the Guardian Angel.
Fanciful, you say? Maybe not. Later this year, Szolovits will be issuing
Angels to 100 newborns in Boston. Just like real angels, they will sort of hover
in the ether. Essentially, they’re accounts on a secure computer. Parents who
enrol their infants will get an envelope with a Web address, a user ID and a
secret password with which to view their child’s medical records. From the
minute the babies are born, their Angels will be watching over them, keeping
track of every medical event they go through. In time, the Angels will start to
comment on the child’s development, give helpful hints, send relevant drug or
virus alerts, and explain any medical problems in a clear way. Who knows, an
Angel might even save a child’s life.
Szolovits has long felt that computerising medical records could
revolutionise healthcare. If hospitals could share records, doctors anywhere
could call up any vital bit of information on the patient in question. If
records were comprehensive, physicians wouldn’t waste time learning things about
the patient that are already known.
About 25 years ago, Szolovits made the
prediction that all medical records in the US would be fully computerised and
integrated by 1981. “It has come as a great surprise to me that that hasn’t
happened,” he says.
Szolovits has also been sobered by his attempts to get hospitals on board. In
1995, for instance, when he tried to get three Boston-area hospitals to
collaborate on a medical data-sharing project, the whole thing fell apart before
it even started. Technically, such a project was always going to be challenging:
“These systems are not designed to be compatible,” Szolovits says. Hospital
politics ensured that these problems were never solved.
That experience helped reinforce the idea that the system should involve the
patient more directly. “We had already been thinking that the great untapped
resource in the healthcare system was the patient,” he says. “At least they have
the incentive.” Together with two scientists from the Children’s Hospital in
Boston—Isaac Kohane and Alberto Riva—he began to refine the Guardian
Angel concept.
Szolovits concedes that the questions they are aiming to answer in this first
study are pretty basic. Can people figure out how to use it? Will they find it
useful or a nuisance? Will the paediatricians cooperate? And, most important of
all, will the Guardian Angel concept work?
Within minutes of being born, a sample of the baby’s blood is normally taken
to test for things such as syphilis and phenylketonuria. Results are reported to
the state and, in the case of any abnormalities, to the paediatrician. “But not
to you,” says Szolovits. For the 100 babies involved in the first survey, the
Guardian Angel will get the low-down too, and will even provide tips to parents
on interpreting the results. The Angel will also record details of the birth.
How long was the labour? Were there any interventions? How did the baby appear
at birth? Are there genetic traits in the family that could be relevant?
Weight watcher
As each baby develops, its Angel will track the progress it makes. Paediatric
visits happen at around two weeks and six weeks. The baby’s height and weight
will be measured and it will be immunised against common childhood diseases. Its
Angel will take note of all this. Some of the information will have to be keyed
in manually from a desktop or a handheld computer, or scanned in from
handwritten notes, but all lab data will be transferred electronically. Parents
can add additional observations about minor illnesses or peculiar
behaviours.
By the time the children are two or three years old, their Angels will
contain a large amount of information. And just like a paediatrician, they will
be able to use this data to flag up any potential problems. Preliminary work by
one of Szolovits’s graduate students, for example, has already shown that a
computer can do just as well as a doctor at picking up growth abnormalities.
A few years down the line, Guardian Angels could be providing sophisticated
care. For example, suppose one of the babies—call her
Christa—develops diabetes when she is seven years old. Here’s how an Angel
might look after her.
Having been told about Christa’s condition, her Angel downloads pages of
information on what to expect, how to manage the illness and what some of the
latest research is. Then it combs back through her medical records and checks
for any viruses currently under suspicion for having a hand in triggering
diabetes. It finds three and reports them to Christa, her parents, her
endocrinologist and, with permission, to a research scientist who’s
investigating the viral origins of the disease.
The Angel also asks Christa and her parents if they are interested in taking
part in trials of islet cell transplants, to replace some of her own ailing
insulin-producing cells. This is hot new research. It’s only preliminary, but
the Angel thinks it would be worth checking out. It provides a contact e-mail
address for the researchers, as well as a digest of the scientific papers that
underpin the trials.
Meanwhile, Christa has to learn to interpret what her blood sugar levels mean
and how to inject herself with insulin. Her doctor shows her how the first time.
Then she goes home and tries it herself, with help from her parents—and
her Angel.
Testing her own blood sugar is the easy part: Christa wears a special
wristwatch with a built-in glucometer that sends the results directly to her
Guardian Angel. The Angel tells her if it’s too high or too low and explains
what she should do next. If her level is high, it might advise her to exercise
or take more insulin. If it’s low, it might suggest a snack. In animated
diagrams, it reminds her how to inject herself, showing a picture of a needle
injecting the arm. Is the needle like this, it asks. If so, that’s good. Then
another picture appears. Don’t stick the needle in this way, it warns, because
it might hurt!
The Angel continuously monitors Christa’s glucose levels, so it can spot
trends and warn her about possible dangers. For a week her level has been very
high when she wakes up in the morning. Tonight the Angel will suggest that she
increase her evening insulin dose. One particular morning, Christa isn’t quite
sure how much insulin she should take, as she has a two-hour dance class that
day. Last week, at a one-hour class, she started to feel faint. So she presses
the exercise symbol on her personal digital assistant (PDA), puts in the time as
two hours and selects the “advise dose” icon. The Angel suggests reducing the
dose by two units or taking a double carbohydrate snack.
After two weeks, her morning blood sugar levels are still climbing. This
information is automatically uploaded to her parents’ desktop. When they see the
levels they ask the Angel’s advice, then discuss it with Christa. Together they
decide to change the doses slightly. Christa also takes up the Angel’s
suggestion to join an Internet chat group with other diabetic kids.
The following week, the doctors doing the islet transplant research tell
Christa she is being considered for the trial. They ask if they might have the
password to her Angel, to examine her medical history in more detail. Her
parents and endocrinologist decide to give the specialists access to all the
relevant details.
Obviously, Christa’s world seven years from now is a more sophisticated place
than the one she’ll be born into. Taking today’s data and getting the Angel to
store and understand it won’t be easy. How do you capture the whole gamut of
sources, from doctors’ notes to pharmacy records and lab reports? That’s a real
challenge, Szolovits admits.
At the start, the Angel aims to be a sort of information sponge, taking in
anything and everything it can get. If a doctor doesn’t have time to input
information, the Angel will accept faxed scribblings. If a mother’s recollection
is all there is, that will do. Important things could be entered manually or
e-mailed. For now, everything will be organised by date of acquisition. “Someone
could shuffle through it the way they currently shuffle through paper notes,”
Szolovits says.
The challenge in the longer term is to capture and organise the information
in a smarter way. Szolovits thinks that the time will come when sensors are
ubiquitous. Instead of the doctor telling you that your blood pressure is fine,
the actual reading from a sensor would be transmitted to your Angel, where it
would be stored and interpreted. Temperature, weight, blood-test
results—all these things could be sent straight to the Guardian Angel.
As long as some of the information has to be keyed in manually, the hardware
part of the Guardian Angel will have to be at least as big as a palmtop.
Szolovits hopes that a hand-held scanner could be incorporated to take in
everything from the notes at the end of your hospital bed to the scribbles of
your pharmacist. But if speech recognition ever becomes reality, the Angel’s
hardware might start to look more like a credit card.
Designing something today that won’t be overtaken by tomorrow’s technology is
always a challenge. Szolovits wants the Guardian Angel to be able to evolve with
the times, without ever needing to be overhauled and reset. The first safeguard
is to make sure that it is designed as simply and flexibly as possible. It won’t
use exclusive information systems, but instead will be designed with common
standards in mind.
Plain and simple
For instance, most databases use the SQL language, even if they are sometimes
dressed up with fancy extensions. The Angel’s design will tap into common
systems like this. It will also use a standardised method of reporting lab
results already in place in the US, so that no matter where a test is done and
on what equipment, the results are reported in the same way. The Angel will also
be equipped with a thesaurus. So if you want to know about “high blood pressure”
but your doctor calls it “hypertension”, the Angel will know that you are both
talking about the same thing.
Ideally, people will be able to access the information however they like,
using a desktop computer, a laptop, a palmtop or whatever newfangled device
comes along next. The Angel’s data will be kept on a secure public server. “If
you encrypt the data sufficiently well,” says Szolovits, “the safest place to
store it is publicly.” That way, if a person lives in Ohio but has a ski
accident in Colorado, the relevant details can still be accessed. And if your
house burns down, your lifetime’s worth of medical records don’t go with it.
These days, your medical data is stored unsecured and flies around hospital
corridors unencrypted. With the Guardian Angel, the patient will be the sole
possessor of the password. Most people will probably allow their doctors to have
access. And while you won’t be able to tamper with data already entered, you
will be able to hide details from whomever you choose, be they employers or
prospective mates.
In fact, Szolovits feels very strongly that your own health record belongs to
you and you alone. “It ought to be a matter of national policy that the patient
has an absolute right to privacy,” he says. Nowhere is completely safe, but
tucked under an Angel’s wing might be the best place there is.
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For more information see:
www.ga.org/ga/