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.
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.
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.
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.
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.
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.