The big picture

Indiana EMTs get access to medical records, but better care comes with privacy concerns

Indiana paramedic Tom Arkins remembers the days, not too long ago, when he’d be called to an elderly person’s home and find a giant box of medications on the bedside table. If the patient was disoriented or unconscious, as was often the case, Arkins had no way of knowing what the drugs were or what conditions they indicated. It posed a significant challenge to him as the first responder. “They have a blue pill and a red pill and an orange pill,” he recalls. “Unless you’re a pharmacist, you have no idea what they are.”

Since July, Arkins and other emergency-response personnel in the Indianapolis area have had the potential — and responsibility — for much greater knowledge of patient conditions. That month, their ambulances were equipped with mobile access to an electronic health exchange: a privately run database that contains medical information for about 80 percent of Indiana’s 6 million residents. Now, knowing only a patient’s name and birthday, Arkins can access a summary of the patient’s electronic medical record (EMR) and obtain clinical information, like allergies and current medications, that may guide the person’s treatment.

“With EMRs, if we get a call to the house, I can see, OK, you have high blood pressure and diabetes,’” says Arkins, special operations manager for the emergency medical services at Wishard Hospital. “I can get a bigger picture of what the patient’s medical problems might be.”

Wishard officials believe they have the nation’s first ambulances with mobile access to patient records. But ambulance use is just the latest technological addition for the medical community in Indiana, a leader in developing the kind of electronic health exchange that the Obama administration wants for the country, and that Massachusetts officials say the state will have by 2015. Widespread use of health exchanges promises the tantalizing possibility of both cost savings and better care, with emergency personnel quickly accessing the allergies and conditions of an unconscious patient; doctors easily emailing reminders to patients about the need for routine screenings; consumers switching doctors and taking legible records with them; and patients avoiding duplicative tests when the doctor in the nursing home can see that they just had the same test done in the hospital. But it’s also a plan that presents an enormous logistical challenge and, detractors say, poses the potential for privacy violations on a grand scale.

With $19 billion in federal stimulus money available for health information technology, the race is on to create health exchanges, such as the one that’s been taking shape in Indiana since the early 1990s. Micky Tripathi, the former CEO of Indiana’s health exchange, is now the president

of the Mass eHealth Collaborative, a coalition of the Bay State’s major providers, insurance companies, and medical consumer-advocacy groups. The collaborative has three pilot community-level exchanges now underway in Brockton, Newburyport, and North Adams. Last year, the Patrick administration created a new quasi-public agency, the Mass eHealth Institute, and charged it with implementing a statewide exchange. Rick Shoup, the director of the institute, says work is in the planning stages, but he plans to contract with a vendor — possibly the similarly named eHealth Collaborative — to create the exchange starting in 2010. His ballpark estimate of the price tag is $45 million.

Cutting down on uncertainty

Creating a health exchange requires that all providers within a community use electronic health records. Practices that use them — and about 60 percent of Massachusetts physicians now do — keep information like lab tests, hospitalizations, allergies, and X-rays in an electronic file rather than in a manila one. Many electronic health record software systems also let physicians send reminder notices about routine screenings, like mammograms and colonoscopies, and submit prescriptions electronically to pharmacies. President Obama has called for all physicians to be keeping electronic records within five years, and the stimulus bill provides both sticks and carrots: financial incentives to purchase the software (which can run upward of $25,000 per physician, not counting maintenance) and reduced Medicare reimbursement for those who don’t get on board.

An electronic health exchange is like a database in which all medical personnel who might encounter a patient are working from and updating the same file. It’s a way for consumers who might see multiple physicians to know that all their records are in one place and that a new doctor or specialist has access to their entire history. This already happens within multi-physician practices, like the Partners network; if your primary care physician at Brigham and Women’s sends you to an orthopedic surgeon in the same hospital, that specialist can access any test results your doctor might have ordered and later add a follow-up about your tricky knee. But if your doctor has a solo practice, or just one partner, then any specialist or hospital you go to won’t have access to information about your allergies, blood type, or past X-rays. It’s usually incumbent on you to make sure essential information gets faxed from one place to another — or you’ll have tests and procedures repeated.

Marc Overhage, a physician who serves as CEO of the Indiana Health Information Exchange, says a study there showed the exchange saved $26 per emergency room visit, largely by reducing the need for duplicative tests that can be avoided with historical patient information. “We spend a lot of time and energy seeking and gathering data to help us make informed decisions,” he says. “We often repeat tests — expensive tests and risky tests — because we don’t have the data. It delays care, it adds money, and it adds uncertainty.”

Exchanges, in a perfect world, cut down on that uncertainty. But Micky Tripathi, Overhage’s predecessor who is now at the Massachusetts eHealth Collaborative, acknowledges that getting comfortable with sharing information across practices requires getting comfortable with a different approach to medicine.

“Both my parents are physicians, and they’ll tell you they are trained to deal with the problem in front of them with the information they have immediately available to them,” he says. “They’re not trained to think of themselves as part of the system, to be able to reach out. They’re trained to imagine they’re on a desert island with a patient who has a scrap of paper listing her pills.”

What that means is that many physicians now focus more on treating the symptoms or questions at hand than on assuming responsibility for a patient’s overall well-being.

“I tell you that you have a suspicious lump in your neck, and you need to go see a specialist. I don’t know if you’ve gone,” says Tripathi. “Then, conversely, you show up at a specialist’s door. National data shows that something like 20 to 30 percent of the time, the specialist doesn’t know why you’re there. And 25 to 30 percent of the time, the specialist doesn’t send a message back to the doctor who referred you.”

Just as preventative medicine changed the nature of physicians’ work — Americans now routinely go to the doctor when we aren’t sick — exchanges require another kind of philosophical shift. Or perhaps it’s more accurate to say exchanges reflect doctors’ changing attitudes. Just as it’s no longer OK for a teacher to say, “Well, he came to class the first week but not again, so he must not want to learn,” health-exchange advocates think it’s not OK for doctors to say, “Well, he came in for a prescription and we never saw him again.”

“We could call them,” says Overhage. “Certainly, patients need to have some of the onus, but we have to have some ownership as well.”

Security is paramount

Indiana created its exchange largely without state-government involvement; the effort was driven by affiliates of the Indiana University School of Medicine and focused on creating financial incentives for doctors to join. The exchange has data on 5.5 million people but, Overhage is quick to note, most records don’t tell a complete story. If even one provider — or one laboratory that conducted one test — isn’t in the exchange or joined it recently, then a patient’s record may be incomplete. “It’s the Swiss cheese effect,” says Overhage. “There are holes. But these days, there is more cheese than holes.”

The use of electronic records is a prerequisite to creating a health exchange. Starting in 2015, Massachusetts doctors must do both: switch their records from paper to computer and also share patient information through the exchange. But even when the last manila folder hits the last recycling bin, the exchange can’t work unless all software systems (existing and new) are interoperable. While large providers and insurance companies have handled claims electronically for three decades in Massachusetts, providers haven’t been connected to each other. “We have to make sure we have an information highway that works,” says Health and Human Services Secretary Judy Ann Bigby. “The state is taking on the responsibility for making sure that we don’t have individual doctors in their office who can’t share the information.”

David Delano is in charge of information technology for the North Adams pilot program. With 13 practices and Northern Berkshire Hospital participating, it contains the records of 46,000 people in the Berkshires. Like Overhage, Delano cites a “Swiss cheese” effect — one he hopes a statewide system will eliminate. “The ideal is, everyone’s on it, and everyone is using the same communications standards,” he says. “If a patient goes to the ER, a nurse there can pull up the patient’s record. Many times, people show up in the ER and they’re stressed, they’re injured, they don’t have all the info. This gives us a way to jump-start the process.”

But while electronic exchanges may allow for better teamwork, some say the only way for them to be truly effective is for every single provider in the country to access a single system. Jacob Appel, a physician at Mt. Sinai Hospital in New York who is also trained as a lawyer, believes an effective system would pose too many security risks, but a system with stricter access controls would not be effective. “The only way it’s efficient is if it’s interoperable for everyone,” says Appel. “By a rough estimate, that means 12 million people” — every pharmacist, doctor or emergency responder in the nation — “would have to have access to your record.”

The pilot exchanges in Massachusetts require passwords, and anyone viewing a patient record must enter a reason for the visit. Patients can also find out who viewed their information. The federal legislation authorizing stimulus funds for health technology requires that patients be notified of a breach in their electronic information.

But Appel says knowing that someone’s snooped on you — that your pharmacist mother-in-law in Nebraska now knows about your recent drug-rehab treatment or your Viagra prescription — is small consolation once the snooping has occurred. And he is not comforted by the idea that many exchanges, including the North Adams program and Indiana’s mobile access, show only partial information and do not include, for example, a doctor’s private notes after a conversation.

“The less information, the less useful. The more information, the more dangerous,” says Appel. “If I were to dose most medications, I’d want to know how much alcohol a patient consumes typically. If you delete alcohol use that may be in a physician’s notes, there’s no way I can prescribe. Even something as basic as whether a patient is pregnant can radically change the course of their treatment, and that’s not something people want anyone to know until they’re ready to tell them.”

Appel says that what concerns him most are hackers: the possibility that the medical records of an entire hospital or state or country could be downloaded and posted on the Internet. If your credit card information is compromised in a T.J. Maxx–style breach, you’ll face a bureaucratic nightmare, but will (usually) be able to sort out your credit record. If your medical records are compromised, you can never make your co-worker or potential new boss not know something about you they know.

“There are few things in the world more private than your medical record,” says Appel. “It’s kind of terrifying.”

As Massachusetts moves toward a working health exchange, Bigby says security will be paramount. “We have to put in certain procedures to ensure only people who need to see it have access to it, and ensure we have firewalls and other type of security,” she says.

Indiana’s EMTs have a three-step password process they go through each time they want to access the system, and every visit is logged. “You can’t just look someone up randomly,” says Tom Arkins, who works in emergency medical services.

For him, and other medical professionals in Indiana, the idea of sharing clinical information electronically is no longer new and strange. Extending access to ambulances felt like the natural outgrowth of a system they say is working well: making for quicker treatment, fewer expensive tests, and less chaos in the emergency room. These are all compelling results, one Massachusetts officials hope to replicate here. But doing so requires a leap of faith not everyone may want to take — namely, that a hacker-proof system can be built and that the new system’s benefits will outweigh its inherent risks.

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Still, six months after the first ambulances acquired mobile access, Arkins says his office has not heard much in the way of privacy concerns from citizens, whether because they are accustomed to electronic sharing or because of the circumstances in which they encounter it.

“When people call 911, there are so many other things on their mind,” says Arkins.