STEVE INSKEEP, HOST:
Today in Your Health, we report on the consequence of a change at many doctor's offices. It's common that a doctor or nurse enters information on a computer instead of filling out paper forms about the patient. Those electronic medical records are much easier for researchers to explore. And it turns out that individual patients can benefit from what's learned. NPR's Richard Harris reports.
RICHARD HARRIS, BYLINE: Computerized medical records are all the buzz these days, but they're hardly new. Pioneers at the early HMO Kaiser Permanente were using electronic medical records as far back as the 1970s and saw them as a big part of the future of medicine.
TRACY LIEU: The part of it that they didn't envision that we're envisioning now is how proactive a role patients would be taking.
HARRIS: Dr. Tracy Lieu, who heads Kaiser's research division in Oakland, Calif., says patients don't just contribute information. They can learn from the experience of others, with patient privacy protected, of course.
LIEU: Patients are always saying, you know, don't just give me the averages. Tell me what happened to others who kind of look like me, who made the same treatment choices I did, and tell me not only did they live or die, but tell me what their quality of life was about.
HARRIS: Right now, she has a prototype of how this could work and uses pancreatic cancer as an example.
LIEU: We can put in pancreatic.
HARRIS: She pulls up data from all patients at Kaiser who have been treated for this cancer and then extracts specific information.
LIEU: And let's look at the survival curves for those patients.
HARRIS: Doctors will eventually be able to run a search like this and refine it to look only at people in certain age groups, cancer stages, treatment regimens, also information about their mental and emotional states, which comes from a short patient survey. That's pretty bare-bones information. Ideally, these medical records would provide a much fuller picture of a patient's emotional state. But Lieu says that would require more work for the patients.
LIEU: If you're a patient and someone says, gee, we'd like you to fill out this 30-item survey on a routine basis, you're going to say, why? What will this get me? How will it help my care?
HARRIS: That's one of the many problems researchers will have to solve in order to make these electronic medical records deeply useful in a world that straddles research and practical information. Another missing piece of the Kaiser records is they are shy on genetic information about patients. But the Geisinger Health System in Pennsylvania has sunk a lot of money and effort into adding gene scans to electronic medical records. They already have gene scans for 50,000 patients in their system. Dr. David Ledbetter, the chief scientific officer, says that number is growing fast.
DAVID LEDBETTER: Even though this is primarily a research project, we're identifying genomic variants that are actually important to people's health and health care today.
HARRIS: Geisinger patient Jody Christ volunteered to get the genetic screen done during one of her routine medical visits. Her doctor had been concerned about her high cholesterol and told her to work on getting in shape.
JODY CHRIST: So I started to ride a bike and 10 minutes in I would start to get a sensation down my left arm.
HARRIS: That made the 61-year-old from Elysburg, Pa., uneasy, so she stopped exercising. But last February, she got a call from the program that had run the genetic testing telling her she had a genetic variant that explained why she had persistently high cholesterol levels.
CHRIST: They suggested I make an appointment and come in to talk to them.
HARRIS: That led to a series of tests through the spring. Toward the end of April, Christ took a stress test, which suggested serious heart trouble.
CHRIST: April 29, they had me in for a catheter. And by May 5, I was having triple bypass surgery.
HARRIS: So how do you feel now?
CHRIST: Good, oh, real good, much, much different (laughter). I feel they saved my life.
HARRIS: Full on genetic testing like this is the exception since these tests typically cost a couple of thousand dollars. But Ledbetter says the prices are falling fast and this year could even be in the $300 range.
LEDBETTER: So we think as the cost comes down it will be possible to sequence all of the genes of individual patients, store that information in the electronic medical record. And it will guide and individualize and optimize patient care.
HARRIS: Doctors don't know how to interpret most of the genetic results, but there are a few genetic variants, like Jody Christ's cholesterol marker, that are clear indications of serious health problems. Ledbetter said, easy-to-interpret variants like that have shown up in 3.5 percent of the patients they studied.
LEDBETTER: Well, that 3.5 percent is going to grow. I don't know what the final number will be, but it'll be in the 5 to 10 percent range. And then our hope is that understanding the genetics of those single genes will also help us to understand the biology of more common forms of cancer, cardiovascular disease.
HARRIS: And he hopes even more genetically complex diseases like obesity and diabetes. Geisinger's experiment, done in partnership with a company called Regeneron, is an important foray into the new world where genetic data merge with electronic medical records.
HARLAN KRUMHOLZ: The scientific community has been sort of waiting to see what was going to happen here.
HARRIS: Dr. Harlan Krumholz is a professor of medicine at Yale University. He's excited at the prospect of being able to look at physical symptoms and medical records and then look for genetic variations that could be responsible.
KRUMHOLZ: I think what we're also discovering is that the quality of data all around us is not necessarily research quality.
HARRIS: Think of something as basic as the language in these medical records.
KRUMHOLZ: Words like shock tend to mean different things to different people, and so I think it would be unfortunate if people felt that all of a sudden we have this remarkable treasure trove. There's a long way to go to move from where we are today to where we need to be.
HARRIS: The potential is great, he says, both in terms of understanding disease and helping individual patients. In fact, that's the idea behind a massive federal effort called the Precision Medicine Initiative recently rebranded as All Of Us. But medicine is not yet at home in the world of big data.
KRUMHOLZ: Medicine's got to catch up. And medicine's got to understand how best to take advantage of all the information that's being generated every day.
HARRIS: These early experiences at Kaiser, Geisinger and elsewhere are helping find the path forward. Richard Harris, NPR News.
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