The “quasi –experimental” nature of the study does not allow one to give definitive pronouncements on results, however it appears that the first two hypotheses were supported by the study and the third was partly supported. That is the patients overwhelmingly reported greater engagement in care when they had the ability to see their own notes and wanted to continue with open notes while the physicians found it did not make much difference to their practices with two thirds of the doctors willing to continue with open notes when asked. It is interesting to note however that when open notes just continued after the study period ended, none of the doctors asked to be removed from the program so one can assume that the one third of doctors who said that they did not want to continue did not feel strongly enough to break through the inertia of daily practice to actually request removal.
This is fascinating to me as it takes these academic, VA and group model practices, which are types of practices that do not see the majority of patients in the United States, and does something that is routine in many physician practices around the country, publish it in a major peer reviewed journal and call it groundbreaking. When I was in practice more than twenty years ago, I dictated my notes while in the room with my patient so that they could hear what I was putting into the record and correct and add to the notes as they listened. I was not alone in that practice. I always offered to send copies of the notes and encouraged my patients to make corrections and give input. My wife, in her current practice, seeing very complex sick children with genetic illnesses, routinely sends copies of the letters sent to referring physicians to the parents of those children. In my own primary care doctor’s practice, copies of the notes from my office visit are routinely mailed to me after visits. Every year the notes from my complete history and physical are also mailed to me, as the patient, along with a zip drive to carry with me for emergencies. This is just good practice and many physicians around the country have been doing this for years.
Yet I still welcome this article and the way the authors have studied this practice. Sometimes, studying and highlighting what seems obvious; the need for a person to own their medical records and see everything that is written about them and their body is still necessary as it may not be obvious to everyone. There are those who still fear the information in a medical record may confuse a patient or cause undue stress. This study does not support that fear and instead suggests that open access to information appears to diffuse fear and give people more of a sense of control and involvement in their own care. A health professional should be open with a patient. That is part of the trust and part of the doctor/patient relationship that has almost religious aspects to it. That should hold true for doctors, nurses, therapists and all health professionals. That is part of the calling of medicine and health care.
Many good physicians, have always believed that a person’s independence and autonomy requires them to be the “owner” of their medical records and if they do not physically keep those records they should at least have unfettered access to them. At Accolade, we support and assist people through the health care system and suggest to that that they ask for copies of all records and notes at the time they are being seen. We also suggest that they should read and question everything in those records. In many ways, electronic medical records, email with physicians, and other electronic methods that capture clinical information and personal information make this requirement even more urgent. Electronic medical records have led to the phenomena of “copy and paste” of bad information and dictations can be associated with faulty transcription leading to incorrect information in the record. When a patient has a chance to review and correct what is just plain wrong, their care is improved and they are empowered as people.
What does that mean for patients?
- Each person should own their own records. A person should ask for copies of notes, test results and imaging exams for all of their care.
- Each person should ask their care givers with help to best interpret those records so that they understand what is being said in them.
- If a person sees information in a health record that is inaccurate or incomplete, they should bring that to the attention of their caregiver who wrote the note so that the note can be amended or the new , corrected information can be added to the record. That can decrease the risk of bad decisions being made in the future based on faulty information.
One more word about “quasi-experimental” studies as this is one of two such studies in this latest issue of the Annals. On one hand, I am happy to see the world of academic medicine giving more respect to the clinical studies and studies based on surveys that are uncontrolled that, in the past, have been looked on with disdain. On the other hand, I wonder if in calling it “quasi-experimental” and giving it the mantel of scientific purity, there is a chance for confusion between reports based on uncontrolled surveys and true controlled experimental design. In the final analysis, my joy at seeing respect for clinical uncontrolled studies overtakes my suspicion at the perhaps misleading terminology of “quasi-experimental”.