Last week, I asked the Internet whether it was important for them to view their electronic medical records. Almost 1,000 people voted, with a resounding 77% responding that they wanted access to their record "like yesterday."
It might seem obvious that patients voted to view documents that contain information about medical histories, immunization reports, doctors' annotations, diagnoses, and prescriptions. In some cases, accessing records has resulted in patients stepping in to to correct important medical errors or oversight, or avoiding duplicate testing.
But the results were a surprise to me. For years, I've heard from prominent groups in health care that most patients are fairly indifferent to their medical records. That view has even informed important policy decisions: As an example, in part due to pressure from physician groups, Centers for Medicare and Medicaid Services (CMS) implemented a rule change that made providers responsible for just one patient viewing, transmitting, and downloading their digital medical record in 2015 and 2016, down from than the previous 5%. That's not one per person—that's one total.
"The biggest issue in the pushback on CMS from groups like the American Medical Association and American Hospital Association was that providers shouldn’t be accountable to patient behavior, and that patients were often indifferent," says Arien Malec, a vice president at RelayHealth and former employee at ONC, the government agency responsible for coordinating the implementation of health IT. The AMA admits here that it urged CMS to make this "immediate improvement"; AHA has also pushed for a rollback of this rule on the grounds that physicians' performance shouldn't be "contingent on the actions of others."
Farzad Mostashari, the former chief of ONC, believes that it's important to hold doctors accountable. It's not a lack of interest, he says, but a lack of awareness and a poor user experience. "That rule change presumed that patients were indifferent to their medical records, but we've seen plenty of examples of hospitals achieving 30% to 40% rates of access (to medical records) simply because they told their patients about it."
Malec provided another example of how this view of patient indifference informed policy: For years, doctors and policymakers have debated whether patients want—and are equipped to handle—access to their lab results. Until recently, some states explicitly forbade it. Meanwhile, studies have shown that most patients would rather have direct access to their results, even with all the jargon, rather than wait for a doctor's interpretation.
Numerous studies and polls, my informal one included, have shown that patients do want access to their medical records. But if and when we start assuming that patients aren't indifferent, it is still up for debate on whether it's in the best interests of patients (and doctors) to access their records.
According to a 2014 poll from the research firm Accenture, only 36% of doctors agree that patients should be trusted to have full access. Their concerns, according to author and cardiologist Eric Topol, include things like: What if a patient read a note in which their doctor described them as obese? Would they misinterpret commonly used medical jargon, like "SOB"?
Recent studies might assuage these fears. One example is the yearlong trial of OpenNotes, an initiative that enabled doctors to share their notes with their patients. One hundred five doctors and more than 19,000 patients participated in the experiment. The results found that 77% to 85% of patients reported a better understanding of their health and medical conditions. Only 1% to 8% were confused, worried, or offended by what they read in the notes.
Regardless of how they feel about their records, patients do have the right to access them.
But the process can be a logistical nightmare. Some patients are charged $1 per page of their records, which includes dozens of pages that say little more than "this page has intentionally been left blank." Notable technology investor Esther Dyson told me recently that she once hired a summer intern to hunt down fragments of her medical record from various hospitals. But many of these records were missing or had been lost.
"A few things have coalesced in favor of patients, but it's still just that bit short of it being an actual easy-to-do thing," says Mostashari.
Making matters more complex, the hospitals and clinics themselves often struggle to locate a complete, accurate, and up-to-date copy of patients’ medical records. The technology systems they use are often proprietary and lack the infrastructure to easily share health information from one hospital or clinic to another. Have you ever shown up at an emergency room, and witnessed administrators struggle to track down your medical record from a nearby hospital? That's why.
Until these barriers come down (and efforts are under way), it will remain a challenge for most patients to access their record. Which is why, over the next few months, I’ll be embarking on a journey of my own to aggregate my medical records as research. I’ll keep you informed of my progress—and what it says about our ability to easily access our own medical records.
I'd love to hear from you if you've accessed your medical record. Did you regret it? Or, have you seen your record and caught an important error or oversight? Have you struggled to gain access to your record? Please get in touch: Cfarr@fastcompany.com