Regarding the article “More U.S. patients to have easy, free access to doctor’s notes,” as a health researcher and public health advocate, I am thrilled that providers will be required to share their notes with patients. When patients know what their doctors say about them, they are more engaged in and satisfied with their care.
To the extent these notes are ever made broadly available to researchers in a de-identified manner, the possibilities are endless. Researchers could use natural language processing and other analytic methods to assess new dimensions of the patient/clinician relationship and associated clinical outcomes.
But to be clear, there is nothing easy about this change. In as much as this development could be a boon for patient agency and offer interesting research pathways, there are many land mines. In the analytics field we often see data-rich, information-poor environments, or scenarios where organizations possess ample data without background, sense of accuracy or uniformity. Without careful context and consistent data-collection protocols, data can be meaningless or, even worse, misleading.
Whenever we undertake a new research project, we must develop a data dictionary to know what we are looking at and how it was developed. As clinician notes become more broadly accessible, it is incumbent upon healthcare organizations to ensure that patients are not simply sent an electronic link to notes, but are armed with easy access to data dictionaries and, ideally, resources and contacts to ask questions.
Even better, enable patients to record their own observations in the notes. The work led through the Open Notes movement is a great place to start to ensure that patients have knowledge and information, not just data.
Jessica Steier, DrPH
Vital Statistics Consulting