article by Alison Motluk, 30 September 2000

Someone to watch over you

If you can't remember when you had your last tetanus shot, or what drugs you're allergic to, you need an Angel, says Alison Motluk

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. 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.

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. 

For more information see: www.ga.org/

30 September 2000