We are definitely in the era of data access and transparency. These days you can find information on anything and everything within a matter of seconds. You can become a subject matter expert on any topic within a matter of hours: music, cooking, foreign language, weather, travel. The possibilities are endless. That is, unless you want information on yourself—specifically, medical information.
Despite all of our advances in technology in the information era, many patients still find it extremely difficult and frustrating to gain full and transparent access to their medical records. Electronic health records (EHRs) have made it easier than ever for practitioners to find information about their patients, including pharmacy and access queries to determine what medications they are (or are not) taking, and where they have recently accessed care. But EHRs have not been widely utilized as a tool to grant extensive, real-time access to patients.
But change is afoot. Both providers and patients are now realizing the value of offering patients more open access to their medical records. Many organizations with EHRs have created patient portals, where patients can access limited portions of their medical records such as medications and allergies, can request items such as prescription refills or appointments, and can ask their providers about their care. Some medical centers are participating in OpenNotes initiatives, which give patients direct access to provider notes within the medical record.
Although these patient portals are a great first step in transparency and engagement, the information granted to patients is limited in content and timeliness. Generally, such items as test results must first be “released” by a provider before they can be viewed by the patient; some organizations have set restrictions, determining that some tests cannot be released at all (i.e., abnormal pathology or HIV test results). The rationale for such restrictions is to prevent patients from finding out sensitive information from a web page; many assume that the patient would be much better off finding out such information from a provider than a computer, and that well may be true, if the information is available in a timely fashion and is shared by a provider who can relay the information better than a computer.
The medical industry still has a long way to go to realize full medical record transparency for patients. One legitimate barrier is that medical records were never intended for patient view or use. Most do not read like a story; they read more like a ledger, full of medical jargon and text boxes in illogical order. This is primarily due to the fact that EHRs were designed for regulatory and billing purposes, not to eloquently—or even adequately—summarize what the patient is (or was) experiencing.
Another major barrier is that the information in the medical record is often difficult to find, and the record itself is difficult to maneuver. Experienced and trained providers, even those who have dutifully completed medical training, often find it challenging to locate exactly what they are looking for. The burden would be on the patient to learn, understand, and navigate the medical record, and few would likely undertake such a challenge.
There also are legitimate cultural barriers among providers, who will resist giving patients carte blanche access to the EHR; many providers cite concerns that if they honestly summarize sensitive information in the medical record (i.e., social habits or medication compliance issues), patients may be angered, with resultant loss of trust, retaliation, or legal action.
Clear the Hurdles, and Next Steps
There is a great story about how well medical record transparency can work, summarized in a New York Times article a few months ago.1 The story tells of 26-year-old Steven Keating, who had a “slight abnormality” on a brain CT that was done in 2007 as part of a study he had volunteered for.2 Although reassured by a “normal” follow-up scan in 2010, Keating was inquisitive, wanting to understand everything about his condition, and read voraciously about what his initial brain scan could mean. He knew the initial abnormality was near his olfactory nerve, so in 2014, when he started intermittently smelling vinegar, he suspected it might be related to the abnormality noted in his initial scan.
He sought immediate care and follow-up imaging, which showed a very large mass. Within weeks, this large astrocytoma was successfully removed; surgery was followed by chemotherapy and radiation.
Over the course of Keating’s care, he amassed more than 70 gigabytes of medical information about himself, including 10 hours of video footage from his initial surgery. Throughout the course of his illness, he remained eager to obtain all facets of his medical information, including such videos and scans, and considered these pieces of information critical to his healing process. He found that, in general, when he asked doctors to share information, he was usually granted access to what he wanted and needed, but the onus was always on him to ask. At one point he asked, “How come there isn’t a ‘share’ button at the hospital?”
Steven now has an entire website dedicated to his personal healthcare story, coupled with a passionate plea to enhance open access to medical records.2 He writes: “I have become passionate about open-sourcing the data and how we can learn through sharing. … Patients can collect their own data and they should be able to share it, amongst patients, communities, and to benefit science if desired. Healthcare should be a two-way road, patients alongside doctors and researchers as a team. The future will be driven by networked healthcare, support communities, and, I believe, patient curiosity.”
Steven was able to cobble together his medical record better than most others could, as he definitely has some advantages over many other patients; he is young, articulate, bright, and highly educated. It would be much more difficult for an older, less well educated, or disenfranchised patient to accomplish this level of understanding of and engagement in the current system. “The person with the least access to data in the system is the patient,” he writes on his website. “You can get it, but the burden is always on the patient. And it is scattered across many different silos of patient data.”
Providers and patients alike should insist on more transparency, coupled with better and more streamlined communication. As patients become more agile at maneuvering through the web portals and more engaged in their care, patients and providers gain innumerable advantages. Patients could help to find any and all medical record information that is incorrect or inconsistent, working to ensure the accuracy of the content—and get rid of “chart lore.” They could fill in missing content and update information between visits, such as changes to their social history or demographics. This is all very good timing, given the recent shift to pay for performance and population health; as financial incentives are veering away from fee for service, it is becoming more profitable to help patients stay well than to keep them sick.
As hospitalists, we should look forward to these advances in technology to enhance access to information for ourselves and for our patients. We should seek out mechanisms within our organization to enhance the speed at which open access for patients is granted, to improve patient engagement throughout the spectrum of their care.