Part of the Transforming Life as We Age Special Report
There’s a flip side to the federal law that protects the privacy of your health information: namely, provisions that are meant to make it easy for you to get copies of your own medical records. But if you have to pay $111.68 for a copy of your 100-page file in Georgia or $218.70 for 150 pages in Minnesota, does that meet the standard of easy access?
The authors of a January 30 opinion piece published by the American Medical Association say “No.” They encountered those fees as when looking into what states across the country allow health care providers to charge patients for their records.
“If the patient earns Georgia’s minimum wage of $5.15, he or she will need to work more than 21 hours” to buy a copy of that 100-page file, they wrote. Outdated laws are part of the problem.
Patient Portals Don’t Solve This
“Providing individuals with easy access to their health information empowers them to be more in control of decisions regarding their health” and is part of “the movement toward a more patient-centered health care system,” says the U.S. Department of Health and Human Services in an online explanation of patients’ rights to their records.
When my mother goes and sees a doctor halfway across the country, I say, ‘What happened?’ and she really can’t tell me.
— Dr. Harlan Krumholz
People who can see their medical records have a chance to better understand and ask questions about their treatment. They can share information with caregivers or family members who want to support them in making health decisions. They can give their records to a new doctor they’re seeing for a second opinion or because they’ve moved.
“When my mother goes and sees a doctor halfway across the country, I say, ‘What happened?’ and she really can’t tell me,” says Dr. Harlan Krumholz, a cardiologist and researcher at Yale University and Yale-New Haven Hospital and co-author of the article published in the journal JAMA Internal Medicine. “It’s not because she’s not with it, but she just can’t really recall or in any detail say what happened. For her to be able to say, ‘Well let me share with you what the records are’ is extremely meaningful.”
Online portals that health systems create for patients to access their records are of limited usefulness in this regard, Krumholz and his co-authors wrote. “Patient portals can render less information than a full medical record, often missing clinical notes and images,” among other things, they said. A noteworthy exception is the robust Blue Button download system offered by the Veterans Health Administration.
Paper-Era Laws Conflict and Confuse
In any health care system, people are entitled to their complete health records, images, physicians’ notes and all. The law that protects those rights is HIPAA, the federal Health Insurance Portability and Accountability Act of 1996.
Electronic health records (EHRs) are the norm today, but HIPAA was written before EHRs were common. So where the law talks about patients’ rights to their health records and regulates what health care providers can charge them for copies, it does so primarily with paper copies in mind.
HIPAA says health care providers can charge fees that are “reasonable” and “cost-based,” and that they can recoup only specific expenses: supplies, such as paper and toner; postage to mail copies to patients and labor to photocopy or scan the pages, or to prepare a summary or interpretation of the records if the patient has asked for one.
Other costs cannot be passed on to patients in the form of fees, including search and retrieval time or the expense of maintaining a data storage system, “even if such costs are authorized by state law,” says the U.S. Department of Health and Human Services, which added the italics for emphasis.
But most state laws have not been harmonized with HIPAA, creating confusion about fees. Austin Jaspers, a former student researcher at Yale and one of Krumholz’s coauthors, says that at least 12 states have statutes allowing providers to charge patients for search and retrieval time, for example.
And like HIPAA, state laws tend to be about paper records. At least 42 states specify what a “reasonable” and “cost-based” fee would be, giving per-page rates that vary widely. For a hypothetical 500-page medical record, the fees that states allow range from $0 — that’s in Kentucky, which the authors hold up as a model because it mandates that patients can receive at least one copy of their records free — to nearly $700.
Jaspers asks: If $200 for 500 pages is reasonable and cost based, how can $500 for 500 pages also be reasonable and cost-based? The variation, he says, “begs that kind of question.”
Providers Can Charge a Lot, a Little or Nothing
Per-page fees beg another kind of question: How much does it cost to copy a page when it’s digital?
Last year, the Office of Civil Rights at the U.S. Department of Health and Human Services answered that question indirectly. It issued new guidance to health care providers suggesting that a flat fee of $6.50 for digital health records, no matter their size, would be appropriate. That amount is not a cap on digital records fees, just an option for providers. Their other options are to calculate their actual costs for copying a given patient’s record or to calculate and charge their average cost to copy patient records.
Guidance like that from regulators and lawmakers is one possible route to bringing medical records fees down and making them more consistent. But health care systems themselves also have latitude to solve the problem of high fees, and some are. Health care providers can charge what they want to for medical records, as long as it doesn’t exceed the limits set by law. That includes the option to charge nothing.
Phone calls made for this article to a dozen health care providers in several states found that half charge patients nothing for their own records, whether in paper or digital format. A few said they charge $6.50 plus shipping for digital records on a CD.
Minnesota and Texas, the states Krumholz and Jaspers cited as having the highest allowable fees under state laws, had providers whose fees were at opposite ends of the spectrum. Two major health systems in the Minneapolis area were among those that charge patients nothing for their own records. Two health systems in Dallas, meanwhile, quoted CD fees of $83 and gave per-page paper fees that were similarly high. One quoted $45.74 for the first 10 pages, $1.54 per page for pages 11–60, $0.76 per page for pages 61–400 and $0.41 per page after that.
High fees are “a vestige of an old paternalistic system,” Krumholz says, one where patients didn’t ask for information or participate much in decisions about their care. “I have an agenda, which is to tip the balance of power” to the patient, he adds.