Many aren't aware, but consumers of health care can request and view their medical records.
That includes the notes their nurses make, medications they've been prescribed and details of any procedures they underwent.
The documentation might be maintained at multiple hospitals or medical offices, and it might stretch on for hundreds of pages. But, with the exception of pscyhotherapy notes, patients have the right to go to the records department where they were treated and request a copy, under the federal Health Insurance Portability and Accountability Act.
If it were only that simple.
Understanding your own health history could be important to making the best choices. But experts said that information is harder to retrieve than it needs to be.
Also, it likely won't provide a clear road map to navigating the health care system.
Steven Cardinal is the chief information security officer for the Medical University of South Carolina. He said health care providers can be reluctant to hand over records, even to the patients who request them.
One reason is that front-line staffers are fearful of violating strict federal privacy laws, which would be a crime, he said. So, instead, they err on the side of caution and withhold information that should be released.
"Sometimes fear gets in the way of taking care of the patient," he said.
The issue of providing patients with their medical records was on the agenda at the annual S.C. Bio conference that was held in Charleston on Oct. 24 and 25. A panel of experts discussed ways of "cleaning" patient data and giving consumers better access to their personal health histories.
"If you really look under the hood, the patients own the data," said panelist Ravi Ravindra, chief technology officer for BlueCross BlueShield of South Carolina.
The government agrees. Cardinal of MUSC said recent guidance from the U.S. Department of Health and Human Services, in a report that has not yet been released publicly, shows health care organizations are too slow to make patient data available.
Federal health privacy law requires providers to make the records available to their patients within 30 days. Having access to information is shown to make patients healthier and help them lower the costs of their care, according to an HHS report.
To meet that need, some health plans, employers and independent contractors have started offering to keep separate personal health records for patients.
Surprisingly, technology can be one of the stumbling blocks. Gyalia Rutledge, a legal nurse consultant near Augusta, Ga., said notes that clinicians once jotted down by hand are now largely processed by specialized software programs.
As a result, the information often isn't legible for the average person. And records that should be a couple of hundred pages long can stretch into the thousands because so much information that's useless to patients is included, she said.
Also, the results don't always make sense, said Rutledge, who recently reviewed a medical record that specified a patient was not suicidal, homicidal or anxious. The patient, in that instance, was an infant.
In her job, Rutledge reads and interprets records for clients and she said that the costs of retrieving health data can be steep. She said many hospitals or physicians offices charge a fee based on the number of pages requested. And those charges vary.
Still, Rutledge said she thinks the effort and cost can be worthwhile not only for patients but their families as well, especially when medical emergencies arise. Knowing the specifics of what prescriptions have been given, for instance, can prevent potentially dangerous drug interactions,
"The more you know about your own health care, the more your family knows about your own health care, the better it is when you're in an emergent situation," she said.
Rutledge offered one tip, saying patients who want to view their records can ask for abstracts, or summaries, rather than the entire detailed account.
Another suggestion: Keep your own records of the medications you take and of your doctor's orders.
Even if all patients had their records in hand, Cardinal of MUSC said it doesn't guarantee they would understand what they're reading or be better health care advocates and consumers.
"Transparency is good, but we can't all take advantage of it," he said.