Every time she visits a new doctor, long-time breast-cancer patient Jeanne Patterson prints out dozens of paper files about her medical history. She carries bags filled with sensitive documents, CDs and DVDs to each specialist.

Patterson has no choice: her medical records have ended up scattered among 20 different hospitals and health systems, and none of them can be easily shared or accessed electronically in one place.

“It went from the breast to the bone to the brain in a year’s time,” Patterson said of her cancer. “My access to my records into my health status was incredibly cumbersome. I just started carrying it with me.”

“It’s the noise in the health care system that will drag you down,” she said. “That’s what I call the train wreck.”

Patterson’s story is far from unique. Across the United States, millions of patients are finding that their electronic medical record cannot be efficiently or securely shared between doctors, especially among those working at different health systems.

“There is a fancy word for this, it’s called interoperability,” said Dena Mendelsohn, a health policy analyst with Consumers Union, based in San Francisco.

Mendelsohn said the inability to share health information across medical systems is slowing down the consumers’ ability to access high-quality health care. Patients who walk into a hospital are complete strangers; it’s not always clear whether they have a medication allergy or a chronic disease.

“If there is an emergency medical situation and the patient is not able to explain what’s going on, their system should be able to access their records,” she said. “But if they are taken to one hospital and their records are at another, then their doctor is going to be starting all over again.”

The inability to share data causes other problems, too.

“It means care could be more costly because tests are being done that might already have been done,” Mendelsohn said, “and it increases the likelihood of medical errors.”

How We Got Here

Many health industry experts say patients like Patterson should not be finding data-sharing a challenge in 2015. In the era of such user-friendly Internet services as Facebook and Google, it is shocking to some that pertinent and sensitive medical information should still live in PDF files attached to emails, or be delivered by fax machine.

What’s happened, experts say, is that private, competing companies sold proprietary software to hospitals that can't talk with each other. Also, several of the largest electronic health records systems have prioritized billing and regulatory reporting over other aspects of care. And many hospitals are still wedded to “fee for service” models, which reward doctors for pricey procedures and tests, rather than patient outcomes. The medical record vendors are helping these hospitals thrive in the status quo by driving up volumes of pricey procedures, policymakers say, and there is little incentive to share access to the records of those lucrative patients.

“These fee-for-service hospitals are fighting tooth and nail to retain patients — and the vendors are responding to these needs,” said Dr. Bob Kocher, one of the key architects of the Affordable Care Act, and a partner who focuses on health care with Venrock, a Palo Alto venture capital firm. “They [some hospitals] have not wanted features that make it easier to share information.”

The inability of medical records to be easily electronically accessed in different places is a major failure in America’s health care system, experts like Kocher say, despite more than 20 years of political and health industry leaders advocating for streamlined system as a critically needed tool to improve patients’ health.

Unlike most patients, Patterson, the breast cancer sufferer who carries bags of her paper records, and her husband are in a position to push for a change. Neal Patterson is the chief executive of Cerner Corporation, a Kansas City-based medical software corporation which made $3.4 billion in revenue last year selling its medical record technology to hospitals and other care providers.

“The paradox is that I am one of the few people that should be able to fix this,” he said. “I’m frustrated that we’re not moving faster.”

At a recent Cerner conference, Patterson shared a video of his wife discussing her struggles with medical records, a video the company shared with KQED.

Neal Patterson envisions a future where a patient walks into a hospital, or clinic, and with consent, the practicing physician or nurse could pull up a complete medical record with a single push of a button. Before prescribing treatment, the doctor would scan the record to avoid repeating tests or prescribing unnecessary or potentially harmful medication.

Patterson’s vision is not new.

Calls for the digitization of health information, with a goal of lowering costs and delivering higher quality care, date back to the Clinton era. Former President George W. Bush also chose the issue as a personal passion project, noting in his 2004 State of the Union address that doctors could save more lives when armed with modern technology.

The long quest for electronic medical records. Click the circle to see each year. (David Pierce/KQED)

It was not until 2009, however, that President Obama signed a law that attempted to speed the transition from paper records to electronic records by offering doctors and hospitals incentive payments through Medicare and Medicaid if they used electronic medical records. The law, called the Health Information Technology for Economic and Clinical Health Act, or "HITECH Act," provided roughly $30 billion over 10 years for the payments. It took effect on January 1, 2011.

“The government provided the funding, but private developers created the system,” said Mendelsohn, “and the medical providers were incentivized to purchase the system. But nowhere in the conversation was it said that these systems had to talk with each other.”

Now the government is trying to address the interoperability problem. Through April 3, the U.S. Department of Health and Human Services is taking public comments on a new “roadmap” designed to approve more uniform technical standards for electronic records.

“Great progress has been made to digitize the care experience,” said HHS Secretary Sylvia Burwell in January. “And now it’s time to free up this data so patients and providers can securely access their health information when and where they need it.”

It’s a huge undertaking.

Arien Malec, a former technology coordinator for the department, said most doctors are now using some type of electronic records, but overhauling the entire system will take time.

“This is like 15 percent of the economy going from the Stone Age to the Internet age in five years,” Malec said. “It’s like going from paper ledgers to online banking in five years. Wow, that would be painful.”

The payoff of getting it right is big, experts say. Benefits of seamless electronic medical records including personalized medicine, better preventative care and accessing doctors and medical information through mobile devices such as smart phones and tablets.

“I’ve been shocked in the past six months how many policymakers say the next big mountain we’re going to climb in health care is interoperability,” said David Brailer, who was appointed the federal government’s first national coordinator for health information technology in 2004.

While most hospitals in the U.S. have adopted expensive electronic health record systems, a team of researchers, advising the federal Health and Human Services Department, concluded last year that their progress has amounted to little more than scanned, digital versions of the old paper-based systems.

Neal Patterson, Cerner’s CEO, points to a confluence of factors that are holding the industry back: Accurately identifying a patient can be challenging, he said. The United States is one of the few countries that lacks a universal patient identifier, a number that tracks every iota of a patient’s health care data, and health-focused identity management tools are still nascent. Moreover, the industry needs more user-friendly mechanisms to request patient consent, he said.

The greatest hurdle of all, according to Patterson, is to break down the walled garden. Electronic health record companies need to work together to solve this interoperability challenge, he said, rather than to take the line that "If everything is on my system, it will work."

Although many vendors engage in similar practices, Epic Systems, a company in Verona, Wisconsin whose software is widely used in U.S. hospitals, has taken the brunt of the criticism for growing its empire by creating a digital barrier between its customers and those not on its network.

Patterson says his company, Cerner, a major competitor of Epic, is putting its money where its mouth is, and in 2013 helped found a not-for-profit alliance with rival companies called CommonWell Health Alliance to create better tools for exchanging data. Not all of its competitors signed on, however, which may hamper the initiative from meeting its goals. Some of the biggest medical record vendors, such as Epic Systems, have not joined.

Epic spokesman Shawn Kiesau said its customers, which include large hospitals, can exchange medical records with each other and connect to other groups. The company said that it already has forged some connections with members of the CommonWell group, including Cerner, and that it’s own offering, Care Everywhere, is “much more mature.”

"The industry has come a long way in a short period of time, but there is more to do to help accelerate the connections necessary to exchange patient records between all organizations,” Kiesau added.

One common difficulty now for doctors is that the medical record system is not typically able to track patients when they’ve seen a specialist, either inside or outside their insurance network.

“I still find myself asking questions like, ‘What did the specialist say?’” said Dr. Kathleen Clanon, when following up with patients.

“It’s embarrassing and stupid, but that’s where we are,” said Clanon, the Medical Director at Health Care Services of Alameda County and a practicing physician.

Amy Gleason, a registered nurse from Tampa, Florida, has worked with electronic medical records for years, said six years ago her young daughter Morgan started feeling a variety of symptoms including muscle weakness, headaches and fatigue.

Gleason hauled her medical information to a dozen doctors in six different health systems. Gleason said she believes her daughter’s diagnosis of a rare autoimmune disease called Juvenile Dermatomyositis was likely delayed, because her primary care doctor wasn’t able to see her medical history in a single view or a timeline of her visits.

“He would have wondered why an 11-year-old was having so many doctor’s appointments,” she said. “He would have seen that a pathology report from over four years before her diagnosis said that she should be evaluated for an autoimmune disease. Instead, she was sick for 15 months, bouncing around the healthcare system.”

Gleason said it’s unrealistic that patients and their family-members should be expected to take control of their medical records. Although health providers are legally required to provide a copy of a medical record, Gleason said they will routinely charge a $1 a page fee (leaving patients to foot a bill as high as $1,000), require that patients show up in person, or claim they never saw the request. Gleason is now the chief operations officer of a startup company, CareSync, which helps people compile scattered fragments of their medical records.

Sickest Suffer Most

Many have criticized the government for setting standards that require too much, too soon. Some have pointed out that in order to meet what insiders call “Meaningful Use,” the criteria in the 2009 law to meet for financial incentives, hospitals have had to adopt older legacy technology, rather than more nimble solutions such as a cloud or web-based upstarts.

“We heard that this new system was going to digitize everything and super power physicians by helping them get answers quicker. Instead, it’s done the exact opposite,” said Malay Gandhi, Managing Director for Rock Health, an early-stage investment fund in San Francisco that is dedicated to digital health.

“Rather than spending time with their critically-ill patients,” Gandhi said, “doctors are spending much of their time in-putting data into the medical records to meet a long list of ‘Meaningful Use’ requirements. And the hospitals are adopting the systems that are most adept at ticking regulatory check-boxes, rather than supporting patient care.”

Another stumbling block is that interoperability doesn’t seem like much of a hot-button issue, particularly for those in good health.

“For 90 percent of people, it doesn’t make a difference because they’re not sick,” said Jonathan Bush, chief executive of cloud-based electronic health record company AthenaHealth and the cousin of the former President George W. Bush.

“But for the rest who are driving 65 percent of the bill, it’s unbelievably frustrating.”

Often the sickest suffer the most.

“The sad reality is that the patients most affected by this issue are those with the most serious medical conditions, often from economically disadvantaged backgrounds,” said Jonathan Hirsch, founder of a Palo Alto-based startup called Syapse, which develops software to integrate patients' genetic data with their medical records to improve the treatment of complex diseases, including cancer.

Hirsch said his company is one of many startups that is stunted by the laborious process of dealing with fragmented data, stored in formats that computers can’t ingest.

For his part, Cerner CEO Neal Patterson believes the industry can move to interoperability within “the better part of a decade.”

“We have to get the industry to commit to this and the government to create some compelling guidelines,” said Patterson, adding that being able to more easily share medical information will lead to higher quality care and lower healthcare costs.

“Patients won’t want to keep carrying their information around in bags,” he said.