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.