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Island of Doubt: When it comes to medical mysteries, examine the charts

Island of Doubt: When it comes to medical mysteries, examine the charts

Picture of William Heisel
[Photo: Brendan Smialowski/Getty Images]
A patient dies unexpectedly in a well-respected hospital, under the care of a well-known physician, even.
The resulting news stories often contain quotes from family members, a written statement from the hospital, and a non-comment comment from the physician’s attorney. What these stories often lack are documentation.
And yet, a patient’s medical records are often a blueprint for excellent news stories. They essentially contain dozens of sources, sometimes more than 100 in complex cases. And everything is written down and ready to be sourced by you, the reporter.
You don’t need to rely on the patient’s spouse to remember what time of night they started showing signs of a fever or what type of drug they were given or who came in to check on them — or was supposed to and didn’t. 
It’s even better if you can go and find it in the records. 
So here’s the first question you should ask when someone contacts you with a tip about something amiss with a patient’s care: “Can you get access to the medical records?” In 2012, I wrote some tips for patients in trying circumstances working with reporters on stories. I suggested that patients should always gather their relevant medical records to share with reporters. I wrote:
That includes any charts, lab tests, X-rays, doctors’ notes, nurses’ notes, and prescriptions. Often, the prescriptions alone tell much of the story. Make a clean copy to keep as evidence for yourself. Then spend some time going through another copy trying to identify the key areas that document the experience as you see it. 
“I tried to get my records but the woman at the front desk said I can’t have them,” your source tells you.
As crazy as that sounds, that does happen. It happened to me when I tried to get copies of my own X-rays once. I was even asked to sign a waiver saying I wouldn’t sue the physician. (As an aside, this was disconcerting, to say the least, given that the physician had not done any surgery or anything else to me that would have been found on an X-ray. The X-rays continue to gather dust on a bookshelf.) 
Reporters can help patients be pushy. For one, you can tell patients that federal law is supposed to provide them access to their own records, not block access. This should be elementary for health care entities at this point, but when staff are scared — as they often are when things go wrong — they sometimes say and do things that don’t make sense. So you may have to help the patients or their families cite the law. The Department of Health and Human Services has provided quite extensive explanation of how things should work. It includes this this simple statement, which may be worth quoting:
The regulations under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which protect the privacy and security of individuals’ identifiable health information and establish an array of individual rights with respect to health information, have always recognized the importance of providing individuals with the ability to access and obtain a copy of their health information.
“But they want to charge me $500 to make copies of my records,” the patient tells you.
That’s probably a case of the health care entity trying to block access by making it financially uncomfortable for the person. Fortunately, there has been case law over the years establishing what can and cannot be charged to people asking for their records. Patients can help minimize the costs by asking, first, whether the records are available electronically — often they are. If they are, send the patient to the doctor’s office with a flash drive. Tell them to request all their records copied onto the drive. It should take very little time and therefore cost very little. 
If they say the records are only available to be printed, tell them that if they have to be printed, they must be stored electronically and therefore you would like them to be put onto a flash drive.
If they say that the records are only stored on paper, the patient should ask whether they were printed or are actually hand written notes that are stored on paper. Often the “paper copies” are just printouts of documents inside the computer that, as noted above, can also be put onto a flash drive.
If the records are, indeed, only on paper and have never been scanned for storage on a computer, then have the patient explain to the health care entity that the intent of HIPAA is to provide access to records without an undue financial burden. Can the copies be made at a time and a rate that makes sense for both parties? And emphasize the costs, per federal law, should be reasonable and reflect the expenses involved. They should include only costs for:
Labor for copying, supplies for creating the copy (paper, toner, USB drive) and postage if necessary. They can charge for making a digital copy of a paper record, but they can’t charge you for storing the digital record. 
I’ll write in my next post about you how you can make sense of what patients and their families tell you verbally and what you find in the medical records.
[Photo: Brendan Smialowski/Getty Images]

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“Racism in medicine is a national emergency.” That’s how journalist Nicholas St. Fleur characterized the crisis facing American health care this spring, as his team at STAT embarked on “Color Code,” an eight-episode series exploring medical mistrust in communities of color across the country. In this webinar, we’ll take inspiration from their work to discuss strategies and examples for telling stories about inequities, disparities and racism in health care systems. Sign-up here!

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