Rachel (not her real name) has been a patient of mine for more than three years. She has a borderline personality disorder that makes it extremely difficult for her to create and sustain relationships and causes significant fluctuations in mood.
She suffered a serious stroke a few years ago, which further impaired her cognitive abilities. Her resultant extreme mood instability led to numerous suicide attempts. Some of them were not legitimate attempts, and she later admitted they were for attention. But there also have been times when she truly wanted to die. Her psychiatrist and I meet with her frequently to try to keep her as emotionally stable as possible.
Rachel will periodically ask to see her medical records. She has a legal right to these records, but there also is concern about how she may respond to seeing doctors' written opinions about her, particularly concerning her personality disorder.
The question of who owns medical information is a big issue. Should the physician or health system own it? Records represent our medical opinions on what is presented, and therefore are not necessarily property of the patient. But why shouldn't the individual own the records? It is completely about them and for them. The issue goes beyond medical notes. Lab work is a literal part of the patient; why should someone else own that?
Different states have different laws regarding ownership. Only one state, New Hampshire, explicitly gives ownership to patients, whereas most states have no law delineating custody of records. In Utah, where I practice, the physician and/or hospital owns the record, meaning that a patient must go through a hospital medical records department, oftentimes with considerable delay, to get their own information. Many systems provide limited access to information through Web portals such as MyChart. This grants a list of a patient's conditions that are listed in patient-friendly terms, medications, lab and imaging study results, and recommended preventive health measures. Basically, everything but reading their doctor's notes.
OpenNotes, an organization that encourages full patient access to their doctor's notes, has started a revolution in this area. More than 5 million patients from at least 20 institutions around the country have full and immediate access to their medical records. They log into a Web portal that allows them to see all of their health information, including what their doctor has written about them. The operative word here is their health information.
Many physicians have been nervous about this for various reasons. What will patients think? Will they be able to understand what is written? What about patients like Rachel? Could it truly be harmful for her to read the notes from her psychiatrist and me? A recent survey shows that two out of three physicians believe that they (i.e., the physician) should own the record.
But even many skeptical physicians have been pleasantly surprised by the results of allowing full access. In one published pilot project, the 105 primary care physicians who participated all wanted to continue its use by the end of the experiment. This pilot also showed significantly improved patient satisfaction and education, and it also was thought to contribute significantly to improved patient safety.
Despite initial concerns from many physicians, it is also believed that patient access to records will lead to fewer malpractice claims because of the increase in trust and transparency. OpenNotes represents a move away from medical paternalism and toward patient engagement.
Some are also concerned, however, that greater patient access could lead to confusion. The classic example is a physician using the acronym SOB. In medical terms it means shortness of breath, but there are other obvious interpretations that a patient may have. Physicians worry that they will have to spend more time explaining their notes to patients and less time on actual care. The pilot study mentioned above did not show that, but it's likely to take more widespread adoption before many cynics will buy in.
There is a pilot underway at Beth Israel Deaconess Medical Center in Boston allowing access to psychiatric notes. It will be interesting to see what it shows. It's possible that patients similar to Rachel will do just fine with more direct access to medical information.
Kyle Jones, M.D., is a faculty member at the University of Utah Family Medicine Residency Program in Salt Lake City. He is the director of primary care at the Neurobehavior HOME Program, a patient-centered medical home for those with developmental disabilities. You can follow him on Twitter @kbjones11.