The law says that rheumatology patients—and all patients—have the right to see and have copies of their medical records, but patients often don’t know the extent of the information within those records, let alone request to see their full files. And their doctors, for whatever reason, generally don’t encourage them to do so.
However, technology may be changing that.
With the growing use of electronic health records—and the availability of portals through which patients could get access to their medical records from their home computers using a username and password—it is becoming easier for patients to have quick access to their medical files.
That’s much more user-friendly than the current system, which can involve the patient coming into the doctor’s office and reviewing the file with a doctor or nurse, or the patient calling and recalling an office before copies are made.
But the easy access to medical records stemming from technological advances has given rise to questions about the medical benefits to such easy access and about which records rheumatologists and other doctors feel comfortable having patients see and read with the click of a mouse. These questions are now being explored by researchers in the U.S. and Europe.
In the OpenNotes project, primary care physicians (PCPs) with three institutions—Beth Israel Deaconess Medical Center in Boston, the integrated Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center, which serves a large economically challenged population—have given patients home access to probably the most sensitive of medical records: the doctor’s clinical notes.
Lead researcher Tom Delbanco, MD, professor of medicine at Harvard Medical School and Beth Israel, says that, until now, notes were the only record at Beth Israel not accessible through a Web portal. The medical center was already ahead of the national curve, but Dr. Delbanco felt they may not be far enough ahead. “What we’re doing is going whole hog and basically saying, ‘Why should that be the doctor’s black box? Why shouldn’t patients have a right to read what we’re thinking? After all, it’s their body,’ ” Dr. Delbanco says.
What Doctors, Patients Think
Results from the first year of this practice haven’t been released yet—publication is expected in the fall—but the results of a survey done at the study’s start show that there’s trepidation over the practice.
A total of 114 PCPs across the three institutions chose to participate, while 140 turned the invitation down. Sixty-nine percent to 81% of the participating PCPs, compared with 16% to 33% of nonparticipating PCPs, thought open visit notes was a good idea. And 92% to 97% of patients thought it was.
If the purpose of notes is for communication between doctors, then shouldn’t the medical information in the notes be essentially the same info as in, or complementary to, the lab reports and treatment records? Why would a doctor be worried about what a patient might read? It’s a professional document and there shouldn’t be anything in it that someone would consider unprofessional personal opinion and/or not of medical concern.
And why should patients be restricted access to the record or notes because they *might* not understand the terminology used? Doesn’t that depend on the education, and tenacity, of the patient, and perhaps their caregiver? Does that mean that doctors and nurses should receive access to their own medical records, but no one else should?
*Everyone* has access to online medical dictionaries and explanations of medical terms, whether they use them to increase their understanding is their choice and should be *encouraged*. We’re talking about adults, so don’t treat them as children. If the information is important enough to be a part of their medical record, to me that means it’s important enough for the patient to know so that they can make informed, intelligent choices about their own health care.
It’s called the right to self-determination.
In my opinion, every doctor who considers themselves caring and responsible should be advocating for their patients’ right to make informed choices. And that is simply not possible without access to a complete medical record.
The article you’re reading is from several years ago. The odds are that a current survey would come back with very different results. Also, please note that the patient does legally “own” their medical record under the Health Insurance Portability and Accountability Act and can request copies of the full record.