When Morgan Gleason was 10 years old, tiny red bumps inexplicably appeared on the tops of her elbows. Over the next few months, the same rash spread across her knuckles. She began complaining of stomachaches and headaches. Then came the day she was walking across a cobblestone street, took a step at an odd angle, and broke her foot.
Her decline continued. A dedicated gymnast and cheerleader in Tampa, Florida, she sometimes slept through practice, too exhausted to move. “She went from flipping and tumbling to where she couldn’t walk up the stairs,” says her mother, Amy. In a span of just over two years, she suffered four broken bones.
Doctors couldn’t explain why Morgan — once nicknamed the family Energizer Bunny — had become so weak and sickly. Finally, with Morgan increasingly frail and the bumpy rash covering all joints, her dermatologist ordered a skin biopsy. At age 11, she was diagnosed with juvenile dermatomyositis — a rare disease in which the body’s immune system turns on itself and attacks muscles and blood vessels. The cause is unknown.
Amy Gleason believes her daughter’s illness could have been caught earlier if the telltale signs had not been scattered among doctors who never compared notes. “If someone had just seen all of her medical records on one screen, someone would have said, Why is she going to the doctor so much?”
But her records quagmire got even worse. “My daughter had 12 doctors at six health systems in three states. Every visit would start with, ‘Tell me what’s happened since the last visit.’ That’s a lot for a parent to keep up with,” she says. She tried to corral all of Morgan’s records into one heaping file; one office charged a $200 copy fee.
Amy began discussing these struggles with her former boss. They had an epiphany: provide others with a service Amy wished she’d had for Morgan — someone to gather medical records and keep them stored on an electronic cloud. She wanted a system any doctor could call up at any time, right there in the office, and an app patients could access, with all of their information literally at their fingertips. In 2011, they founded CareSync. For $299 a year (or a onetime health history for $129), an employee will contact all of a person’s healthcare providers and transcribe records into one chronologically arranged and easily shared document. (CareSync also offers a free version that allows you to build your own health history.)
CareSync isn’t the only business of its type. Increasingly, companies and government offices are helping with the task of obtaining and compiling medical records. The idea is to make it easier for patients to keep up with treatment, transport their histories, and even speed up diagnoses. The companies differ in service and cost — some are even free — but the goal is to create a record that reflects the whole person, and not a detached series of doctor’s visits. Generally speaking, the more you are willing to pay, the more the service will do for you. These services are not just for people with complex chronic illnesses. Consider that the average Medicare patient has two primary care providers and five specialists, all of whom could keep patient information locked inside individual fortresses that never connect.
Different Providers, No Standards
In an era in which banks can send billions of dollars around the world, electronic medical records (EMRs) have become bafflingly complex. The situation arose when good intentions collided with market realities. The economic stimulus bill of 2009 included incentive money for doctors and other health systems to switch from paper to computer- based records. At the time, most records consisted of charts and notes scribbled on paper and tucked into filing cabinets. For one doctor to read the records of another, someone — likely patients themselves — had to physically copy and transfer files on foot, or send them by fax (remember those days?).
By moving to an electronic system, “the hope was that we would see quality improvements in health care,” says Jessica Ancker of the Division of Health Informatics at Weill Cornell Medical College in New York City. In theory, because they are easier to obtain, search, and share, electronic records can reduce the wastefulness of needless duplicate tests or the danger of drug interactions, Ancker says. They may even save money.
The problem is, the whole idea launched with no easy way to share files. Think of your cell phone. No matter which carrier, plan, and model you choose, all devices can call, text, and email one another. “There are even standardizations with keyboard tones, so they work no matter where you call,” says James J. Cimino, the director of the Informatics Institute at the University of Alabama at Birmingham’s Center for Clinical and Translational Science. Those conventions didn’t happen with EMRs, he says, because they arose in part from competing businesses that developed different data management systems. There are approximately 800 different electronic record providers. Many purposely kept their technology secret in an effort to market their own service to hospitals, laboratories, and providers. “There were competitive pressures for a long time,” Cimino says.
Now that proprietary systems are entrenched, Cimino says, “it costs money to adapt and even more money to switch.” There’s no business incentive to make the systems communicate. Even worse, there are concerns that some information is deliberately blocked from one competing system to another. A report to Congress last year on the technical rivalry noted that, “A common charge is that some hospitals or health systems engage in information blocking to control referrals and enhance their market dominance.”
While academic medical centers, EMR vendors, and the government are currently collaborating to make records more open, the job of creating a master record that can be easily transported falls to patients. Hirdey Bhathal of San Diego learned this the hard way, when his close friend and college roommate was diagnosed with kidney cancer almost a decade ago. “I was his wingman,” says Bhathal, who, with a PhD in genetics, was familiar with the scientific terrain. His friend traveled the world — China, India, and Germany — in addition to visiting U.S. institutions, seeking the latest clinical trials he could find.
“My daughter had 12 doctors at six health systems in three states. Every visit would start with, ‘Tell mewhat’s happened since the last visit.’ That’s a lot for a parent to keep up with.”
Bhathal, who also has a background working in the IT industry, was astounded at the difficulty his friend faced with transferring medical records. “There was no way to take his files from one place to another,” he says. “We were tracking everything. We had files and spreadsheets.”
His friend died from complications from his illness four years ago, but the barriers in record management stayed with Bhathal. In 2012, he founded ZibdyHealth to help track medical data. In addition to making the service available, Bhathal wanted to make it free, recognizing that people with complicated medical conditions often spend large portions of their incomes for care itself. “People who need the most can often afford the least,” he says. (He pays for the service by charging insurance companies and other large providers who use his system for care coordination.)
Unlike CareSync, which will do most of the work for you for a fee, ZibdyHealth asks you to log in to your different patient portals to compile the information.
Bhathal recognizes that gathering medical records can be a daunting task, and he tries to keep it as simple as possible, providing step-by-step instructions. His 79-year-old mother is the test patient, he says. “If she can use it on an iPad, anyone should be able to use it.”
The list of record managing services goes on. They include Track My Medical Records, a free service that will let you store your records on a cloud and provide a wallet-size card so emergency medical personnel can access your information.
Another one, PicnicHealth, works more along the lines of CareSync. For a monthly fee, the company will track down and consolidate medical records for you.
Patients who receive health care through the Veterans Administration (VA), Medicare, and other government agencies can download their data through Blue Button. Another link, called Blue Button Connector, can help beneficiaries see if their providers are using Blue Button to manage their information, though it does not compile it for you.
Improved Care Through Patient Engagement
While it can be a burden for some patients, participating in your own records gathering has benefits, says Dawn Klein, a research manager at the University of Iowa, affiliated with the Iowa City VA Health Care System. “It’s important for patients to be involved in their care,” she says. She’s conducted research on VA patients using the Blue Button feature on My HealtheVet, finding that they value obtaining and reviewing their information. It’s also a way to make sure it’s correct. (See “How Do You Fix an Error on Your Health Record?” right.)
And ultimately, patients’ engagement with their own records may help achieve one of the goals of electronic records: improved care. In 2010, a pilot project began in Boston called OpenNotes, a portal that allows patients to easily view their records and doctors’ clinical notes. The response was so enthusiastic that today the system has expanded to include the VA, many academic centers, and other health systems. An evaluation published this year in BMJ Open found that “reading notes helped improve [patient] understanding of health information, fostered better relationships with doctors, improved the processes of care, and helped with self-care.”
This fall, Morgan Gleason will move to Alabama to enroll at Auburn University. She takes 21 pills a day, and often copes with chronic pain, but lives an otherwise ordinary life, her mom says. And she’s comforted knowing that when Morgan moves to another state, she’ll have her entire medical history in her back pocket — on her phone.