Well, get ready for our brave new world in which patients’ unfettered access to their records will soon become the norm.
Coding has run amok. Imagine that you’re an emergency department doctor, looking to code the exam of a patient with burns caused by their water skis catching fire. Yes, this preposterous scenario that defies the laws of physics has its own code.
Reading the Record
Forty years ago, two Yale University researchers in New Haven, Conn., Budd Shenkin, MD, and David Warner, PhD, predicted that giving patients their medical records “would lead to more appropriate utilization of physicians and a greater ability of patients to participate in their own care.”2 It may be hard to imagine, but during that era, patients could obtain their records only through litigation. The passage of the Health Insurance Portability and Accountability Act (HIPAA) in 1996 eliminated the legal barriers to access, and the recent move to digitized records and patient portals to EHRs dramatically simplified the whole process.
Open record systems are already in use, and there is some preliminary data describing their utility. Since 2009, the University of Texas M.D. Anderson Cancer Center in Houston has provided their patients with complete access to their records. One could argue that oncology practices might be best suited for employing transparent record systems. This specialty deals with objective evidence and fairly standardized treatment protocols. How would open records work in internal medicine, in which diagnoses and data are often not as clear cut as in oncology?
In the largest study to date, more than 100 primary care physicians (PCPs) practicing at three disparate locations (an urban teaching hospital in Boston, a rural hospital system in Pennsylvania and an urban safety-net hospital in Seattle) and 13,000 of their patients voluntarily enrolled in a one-year study that evaluated the effectiveness of an open-note system.3 The findings contradict what many clinicians, including myself, would have predicted. In general, patients were enthusiastic about open access to their PCP visit notes, and 99% of those who completed surveys recommended that this transparency continue. The vast majority reported an increased sense of control, greater understanding of their medical issues, improved recall of their plans for care and better preparation for future visits. A remarkable number reported becoming more likely to take medications as prescribed.
In contrast to the fears of many doctors, few patients reported being confused, worried or offended by what they read. The authors suggest that fear or uncertainty of what is in the doctor’s “black box” may engender far more anxiety than what is actually written. Phew!
