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Reading My Oncologist's Notes

How I learned I was "no evidence of active disease," was reminded of an important appointment and the other benefits that the OpenNotes movement wants to make available to all patients
PUBLISHED April 18, 2018
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
I remember when my kids' schools first made parent-accessible online portals where we could find out about upcoming assignments, watch grades and read comments about our student. These days, that's a given in education. If you want parents to be more connected and involved then you make it easy for that to happen. I believe the same thing is true in medicine: If the doctor wants a more engaged, cooperative and informed patient (and safer, better care, too), make it easy by sharing information.

According to Liz Salmi, the Senior Multimedia Communications Manager for OpenNotes (opennotes.org) at Harvard's Beth Israel Deaconess Medical Center, the tools are already available with many patient portals. If you visit your patient portal (the place where you can check for upcoming appointments and bills), you can typically view the results of lab work, such as checking levels of various aspects shown by your blood, and some scan results. If you are a clinician visiting a particular patient's information, you have access to that as well as the clinical/visit notes. These notes provide specifics about the visits: The patient's concerns, planned follow-up, recommended actions, treatments, etc.

Every doctor writes notes because they inform care going forward and remind the physician about what has gone before. They are an important aspect of good care. But most patients don't see them. The culture in medicine has been that doctors communicate betwixt themselves about patients. And just like the word "betwixt,” that culture is out of date. Google, WebMD, the rise of social media and easier access to information have resulted in empowered patients who are eager to understand more about treatment decisions, have a voice and be a partner.

Do some doctors feel threatened or reluctant to share their notes with patients? I'd guess yes. Yet, as the patient, you have a right to view those notes if that is what you want. On my patient portal, I can't see what my oncologist has written. I think the software program very likely has a way to make that information accessible, but the order to do so is not under the patient's control. So, I request paper copies of my doctors' notes.

My experience with reading the oncologist's notes has made me a believer in what OpenNotes wants to accomplish. I've been reminded to make an appointment with my primary care physician, a detail I'd forgotten as soon as I walked out the hospital door; I learned that my oncologist was somewhat skeptical (my word, certainly not hers) about whether or not I told a dermatologist that I had metastatic cancer (I told his nurse, and hey, didn't he have my notes right there on that computer?!); and, most importantly, I read the words “no evidence of active disease” for the first time on one of my notes, even though my oncologist has never said those words to me.

My notes also help me think about questions I'd like to ask and encourage me to do a better job of communicating during high-stress appointments. I wish they were available on my patient portal. On the OpenNotes website, there's a section designed to help patients make the most of reading this part of their medical record. It includes a list of questions to ask yourself about the accuracy of symptoms and medications, the doctor's understanding of your concerns, things you may have forgotten to mention, and if there are any inaccuracies. It can be scary and intimidating to be fully informed about your care. The OpenNotes research is clear that some patients do not want to see those visit notes, yet they still want to know they have access. For me, that is the bottom line: Whether or not an individual patient wants to read everything about his or her care should be up to the patient, but if he or she decides to review notes at any point, that decision should be supported. As for me, I'll keep requesting my notes and urging my hospital to put them online where I can see them whenever the need or desire arises.
 
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