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Patient advocate Regina Holliday  Ted Eytan
Patient advocate Regina Holliday  (Ted Eytan)

Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'

Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'

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For Julia Hallisy, putting medical information into the hands of patients isn't just a professional crusade; it's a personal one.

Hallisy learned the hard way that patients and their families, and not just doctors, can benefit from accessing personal medical documents, including scans, test results and written notes.

That's because her daughter Kate fought cancer five times by the time she was ten-years-old.

"After requesting Kate’s records, I saw all sorts of things that concerned me, whether it was tired residents making mistakes, factual errors, or written notes that contradicted each other."

"Most people don't ask for a copy of their medical record, which is a terrible mistake," she said.


Kate passed away in 2000, the same year that the government passed a rule requiring that health providers share a paper copy of the medical record at a "reasonable cost" to patients who request it (view an estimate of state-by-state costs for 75-pages here). In 2009, the Obama administration went one step further with a program known as "Meaningful Use," which would reward physicians who provide a percentage of patients with timely, electronic access to their medical record -- and later penalized those who failed to do so.

But many patients are struggling to access their medical information, electronic or otherwise. According to a recent report from PricewaterhouseCoopers, only 14 percent of patients get their medical records electronically from their physicians' offices. Thirty percent say they don't understand why they would need to do so.

Today, the debate is raging between doctors, patient groups and the government about how to mediate patients' access to their own health records.

Julia Hallisy and her daughter Kate
Julia Hallisy and her daughter Kate (Julia Hallisy)

The approach set forth by the Centers for Medicare and Medicaid Services (CMS) puts the responsibility squarely on doctors for ensuring five percent of their patients "views, downloads, or transmits his or her health information to a third party."

"Physicians are being held accountable for patients' freedom of choice," said Dr. Steve J. Stack, president-elect of the American Medical Association (AMA).

Stack said 52 percent of physicians who treat Medicare patients are currently being penalized for failing to meet the requirement. Those losses are expected to equal some $200 million this year alone.

Doctors are taking extreme measures to meet this rule, including sitting the patient down and requesting that they log-in to a "patient portal" to view their health information before they can go home, physician groups say.

In response to these concerns, CMS is now considering rolling-back the 5 percent requirement with a proposed rule change. If it passes after a comment period ending on June 16 of this year, eligible medical professionals must only prove that one patient views, downloads, or transmits his or her health information, rather than 5 percent.

Some groups like the AMA believe the proposed change is a positive step as it relieves some of the pressure of overburdened doctors.

As Stack points out, doctors will still need to provide 50 percent of their patients access to their medical information within 4 days (with an option to withhold sensitive materials.) But this differs from the so-called "5 percent" clause, as doctors aren't on the line if patients don't view their record -- or realize it exists.

But patient advocates are up in arms.

"Are they [the Obama Administration] trying to push our buttons? This is a slap in the face to patient rights," said Regina Holliday, a patient activist from Grantsville, Maryland.

The "Messy" Access Problem

For decades, patients had little or no access to their medical information. This was considered the exclusive realm of physicians.

But recent research has shown that when patients engage with their medical data, it leads to better outcomes. And cancer survivors like Dave deBronkart, who goes by his Internet moniker “ePatient Dave” say patient involvement can lead to fewer fatal mistakes.

Medical records contain errors about “two-thirds of the time,” he said. "It's a matter of life and death." It's tricky to estimate exactly how many medical records contain mistakes. But in recent years, the issue has received national attention with patient safety groups making calls in the Senate for electronic systems that minimize cognitive errors.

So why are health providers pushing back on legitimate patient requests?

They may harbor fears that opening up data would negatively affect their bottom-line. Economists have found that in states where it's easier and cheaper to access a medical record, patients are more likely to make a switch to a different physician or specialist.

As a result, many patients are told they can access their medical record electronically, but it remains a logistical nightmare to do so.

High-profile technology investor Esther Dyson said she paid an intern to spend a summer filing requests for her medical information from different hospitals and clinics. After months of work, this intern was able to access no more than a few records -- the rest had been deleted or lost.

"It was a very messy process," Dyson recalled.

Most people, particularly those who are suffering from serious illness, don't have the resources to hire an assistant or pay a company to pull together their medical information.

In addition, reports have shown that some providers will charge fees of over $1.50 per page of a medical record, which can result in a total bill of in excess of $1,000. Moreover, many people face long wait-times and reports are often filled with scrawled notes and medical jargon.

Can Technology Make a Difference?

But patient advocates like Hallisy are optimistic that patient data will flow more easily as health care shifts from paper-based to digital systems.

It costs far less for a hospital to reproduce an electronic copy of a document than to print it. And logically speaking, it should be far more efficient to perform a computer-based search than search through a stack of files.

Hallisy stacked her daughter's medical reports
Hallisy stacked her daughter's medical reports (Julia Hallisy)

But this is easier said than done.

Many hospitals and clinics have been reluctant to invest in web tools that would make it more seamless for patients to access their medical information online. And electronic medical records cannot be efficiently or securely shared between doctors, making it difficult to collect the records from various hospitals and clinics.

Instead, many patients today will be deferred to a web "portal" of sorts, like Epic's MyChart, to view fragments of their medication information.

But many of these portals are outdated, said former Department of Health and Human Services technology chief Bryan Sivak.

"Many offer little useful functionality and are difficult to use," said Sivak.  "Frankly, they could be designed much better."

Some hospitals have argued that patients aren't accessing these portals, so they must be indifferent. Why bother investing in more modern technology?

"You often hear the argument that not every patient wants to spend the time," said Joseph Smith, a cardiologist and chief medical officer for West Health, a nonprofit medical research organization.

"And not every hospital has been able to make it through the technical requirements as we shift away from paper," he said. "We are in an awkward time."

"A Slap in the Face to Patient Rights"

For Hallisy and other patient advocates, hospitals are showing signs of giving up on patients -- without investing in user-friendly tools and education programs.

And the proposed rule change is yet another example of the government and health sector folding its cards too soon, say advocates.

"We needed to give providers a high enough threshold [5 percent], so they would do the work and incorporate patient facing tools into the practice," said Arien Malec, who worked as technology coordinator for the department of Health and Human Services. 

"Now, they won't have to tell any patients. If they can’t find out how to access their medical record, the hospital doesn’t have to help them," he said.

Hallisy fears that hospitals may slash budgets for patient-facing tools to access medical data.

Regina Holliday uses art to spread the word about patient rights
Regina Holliday uses art to spread the word about patient rights (Regina Holliday)

Holliday agrees: "There's a bad joke circulating that the one person could be a hospital staff-member, like a chief nursing officer."

Holliday's husband died of kidney cancer in 2009. During his hospitalization, she requested to see a copy of his medical records, but the hospital informed her that it would take 21 days. As Holliday frequently points out, three weeks is a long time to wait for patients in critical condition.

Ownership versus Access

Technically speaking, patients don't own their medical record. Their doctors do.

And that has led to much of the complications around patient data rights.

In the policy world, questions often arise like, who owns the medical record data if a patient has multiple doctors? And who has the right to delete it or bar electronic access? And as patients start generating medical information from the latest apps and devices, will they own that -- or would the developer?

Moreover, it still remains a contested issue about which parties or groups are responsible for educating patients about the value of access to their medical record. Some have pointed the finger at patient advocates; some say it's the responsibility of the physician or the federal government.

But setbacks aside, some industry insiders are hopeful that the health sector will find answers in the coming years, particularly given the recent outpouring of patient-focused tools from Silicon Valley and other tech hubs.

"It gets a little better every year. It's baby steps in health IT," said Dan Haley, a regulatory affairs expert at electronic health record company AthenaHealth.

But for her part, Hallisy has no intention of sitting back and waiting for change:


"This means the kind of work I do is more important than ever," she said. "Medicine is changing. It could be interactive and collaborative, but we need the public's help."

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