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Is “Allowing” Patients to Read Doctors’ Notes a Right or a Privilege?

Posted on : 28-07-2010 | By : Akiva Zablocki | In : Health, Medical Records, PHR, Social Media

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There has been a lot of debate this month around patients’ access to physician notes. The debate began after the Robert Wood Johnson Foundation (RWJF) announced the funding of a year-long study called OpenNotes. According to Reuters, patients would be able to “look over the notes from a home computer and share them with family and friends if they choose.” After one year the researchers will study the patients’ and doctors’ experiences and try to gauge whether patients want to continue having access to their notes online, and whether doctors want to continue granting that access. There is a real fear that patients will misunderstand the shorthand and medical terms in the notes, as well as create more work for the physician when the patients call in or email concerned or misguided.

Both the Wall Street Journal and the New York Times ran articles on OpenNotes, debating the pros and cons of doctors granting ease of access to their notes online. I emphasize ease of access since, as WSJ eloquently states, “patients have a legal right to see their entire medical record including doctor’s notes,” with an exception of psychiatric notes, which is up to the physician’s judgment.  There is little doubt that one of the most significant changes made by the 1996 Health Insurance Portability and Accountability Act (HIPAA) was granting patients the right to a copy of their medical records, including physician notes. However, HIPAA did not specify that obtaining these notes ought to be free or easy, and left this part up to the providers. Therefore, fourteen years later, we are still debating whether and how patients can access these notes. But the debate here reaches a deeper level, as Reuters asks in their coverage of the study: “After your next appointment, would you want to read everything your doctor wrote about you and your health?” This seems to be one of the major questions the study is trying to answer.  Stephen Wilkins, of the  Mind the Gap blog, has raised some interesting questions regarding what may have fueled the OpenNote project and questions whether most patients really want to see their notes.

Still, there seems to be a real disconnect between the questions being asked and addressed in this debate and what we at Health2Social feel is the more important question. It amazes me how Reuters can start their article with the question “After your next appointment, would you want to read everything your doctor wrote about you and your health?” This reminds me of the debate over Facebook’s launch of the News Feed back in 2006.  Did anyone ask us whether we wanted to wake up every morning and turn our computers on and read what our old college buddy’s neighbor that we met once at a party had for breakfast? No, Facebook just did it, creating a temporary uproar, but then it turned into a social norm that 500 million users all accept today.  Now, compare the usefulness of Facebook’s news feed content to the content that is in the physicians’ notes. I do not know why Reuters thinks that patients need the notes in order to “share them with family and friends if they choose,” while what patients really need their notes for is to own their Personal Health Record (PHR). Patients need these notes so that smart health consumers, which we all should strive to be, can have REAL access to their health records, and not just the “right” under HIPPA. Patients need free and easy access to the notes, so that patients can share these records with their primary physician, not only family and friends, and with the various specialists that manage their care.  Patients need these notes in order to open the bottleneck that is preventing healthcare information from flowing freely, so as to lead to better quality of care. Providers need to empower  patients to OWN their health care data, and healthcare providers need to communicate and educate patients so that they understand this data.

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[…] Is “Allowing” Patients to Read Doctors' Notes a… There has been a lot of debate this month around patients’ access to physician notes. The debate began after the Robert Wood Johnson Foundation (RWJF) announced the funding… […]