We know that more and more physicians are implementing electronic health records. (see post Thursday January 12, Update on EHRs). Now the question becomes how do patients share the information in those records so that they are better informed and can be empowered to do more about their health issues? Dr. Tom Delbanco at the Beth Israel Deaconess Medical Center in Boston (BIDMC) has come up with a solution entitled Open Notes, which would give patients access to the doctor’s notes in their record through a secure online portal.
A pilot study of Open Notes that included 25,000 primary care physicians and patients from the BIDMC, Geisinger Health System in PA, and Harborview Medical Center in Seattle WA, and funded by the Robert Wood Johnson Foundation, concluded that patients really like the idea because they see this as a way to a greater understanding of their issues and more involvement with their care. Physicians on the other hand are less than enthusiastic and have concerns about accountability and privacy of patient information.
Patients do have the legal right to their health record. They can request copies and changes to them if they’re inaccurate. With the digitization of health records the data included is readable , although not always understandable for the average individual. Historically, test results, lab reports, medication lists and medical history comprise the record turned over to the patient upon request. The copy does not include the doctor notes. Patient respondents who were very enthusiastic about Open Notes felt that reading notes taken during their visit with their primary care physician would help them grasp more thoroughly what the physician recommends and help in following the treatment plan. In addition, many patients indicated that they would share the notes with other physicians/specialists who were treating them concurrently. A third of the patients had concerns about the privacy of their health information.
The issue here is how communication between doctor and patient is handled and the trust relationship that is in place with full disclosure of notes. Physicians must be protected from the litigious nature of many patients who might decide to challenge what is in the notes. This could be a problem since there is currently no legislation that specifically addresses this issue. Patients must be protected from the delivery of their notes to unauthorized individuals or inadvertently to social networks and other public exposure. There is also the issue of secure communication of this information. There are only a handful of physician practices or hospital physician groups that have the type of secure portals necessary for enabling the communication of notes in an environment where the privacy of this information is well protected.
As digital communication technology becomes more ubiquitous, empowered patients and enlightened physicians have many practical and ethical considerations, including Open Notes policies, as we all strive toward the goal of better quality, safer medical practice.