Doctors should give patients their damn data


An excerpt from Talking to Your Doctor: A Patient’s Guide to Communication in the Exam Room and Beyond (Rowman & Littlefield, 2013. All rights reserved.)

There are plenty of books out there to teach us how to boldly and proudly advocate for ourselves in the doctor’s office. Doctors have held the reins too long, goes the story, and ignored what patients want and need. So it’s time for patients to step up and ask for what we deserve. If there are medications prescribed, we should know how, when, and why. If there are tests to be ordered, we should have the results in hand. We should even have unfettered access to our medical records—this last expectation has a slogan attached, too: “Give me my damn data!”

Who would be so tone deaf as to deny people access to information about themselves? In the past, a patient often had to make a formal request for documents, and many offices charged patients for copying. However, with the development of new information technology and better security for electronic documents, doctors and hospitals everywhere are now becoming more open. If the “damn data” isn’t quite as open yet as all that, it’s now becoming a matter of course for patients to have access to a “health portal,” where the entire record is available at a click.

This increasing expectation that all medical information be freely available is one of those historical phenomena that gather their own momentum until they snowball along, unstoppable by anyone’s second thoughts. Nevertheless, there are two big problems with the assumption that our “damn data” will soon be widely available to anyone who wants it.

One is that the access is not as open as we would like to pretend. Not everyone is connected to the Internet day and night: only 68 million Americans are subscribed to an Internet service provider. And, of those, there might be some whose access is only intermittent, (i.e., after the kids are in bed, late at night, at work). Intermittent access does not lend itself to thorough review of health records. Others must access the Internet only in public places such as the library, where access to secure sites may be limited or restricted altogether.

What about all the millions of Americans, nearly 55 million of them, or 22 percent of the adult population, per the Pew Foundation, who don’t have any regular Internet access at all? When we talk about opening up health records, we are leaving those people out, or worse yet, deluding ourselves that they are included while leaving them dependent on Internet-connected people. And methods for providing access to health records for these “unconnected” adults are still reliant on formal requests and photocopying, which is not always offered as an option.

While the Internet is important, I don’t think it’s the be-all and end-all of communication between doctors and patients with regard to access to personal records and medical information. Like any other technology, there will be some of us who are not accustomed to using it—and thus what is supposed to be a conduit to a new age of open data might become yet another barrier to our relationship with the doctor.

Zackary Berger is a faculty member of the Johns Hopkins University School of Medicine, where he is an internist and researcher in general internal medicine.  He blogs at his self-titled site, Zackary Sholem Berger, and is the author of Talking to Your Doctor: A Patient’s Guide to Communication in the Exam Room and Beyond.


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