What’s Your Doctor Writing About You? Ask to Read the Notes

Ed Tobias avatar

by Ed Tobias |

Share this article:

Share article via email

I’ve been living with MS for nearly 39 years and I’ve never seen the notes my neurologist has written during my office visits. My neuro did hand me a thick folder of notes several years ago. It had material dating back to my diagnosis in 1980, but when we downsized a few years ago, I shredded it. I wish I hadn’t because, after all, it’s a part of my history.

I’m thinking about this because of a story I just read in the Kaiser Health News e-letter. Reading a doctor’s notes, Victoria Knight reports, “can improve your health.” Knight tells of a woman who read her clinical notes and discovered that her doctor had described her as “clinically morbidly obese.” That’s something her doctor never told her, at least not in those words. The words hit her hard and she became determined to lose weight. “Reading that note,” she says, “saved my life.”

Shared notes can be empowering

OpenNotes is a research project in Boston. As its name implies, it encourages doctors to share their notes with patients. Its mission statement reads, in part:

“We believe that providing ready access to notes can empower patients, families, and caregivers to feel more in control of their healthcare decisions, and improve the quality and safety of care.”

The OpenNotes website suggests that you ASK: Access your notes; Share them when it may help; Know the full story of your health. The site also tells us:

Reading your medical record, including notes, is a federally protected right, and most providers have processes for making copies for patients who request them. You can also ask your clinician to give/mail/email a copy of the note after the visit.

OpenNotes provides suggestions to help you get your medical notes. It also provides tips, along with sample notes, to help you understand the notes when you read them.

Note reading is usually a positive experience

The KHN story reports that when researchers “surveyed patients who’d looked at their doctor’s notes, the majority of patients reported they felt more in control of their care and said they were more compliant taking medication. A small share — from 1 to 8 percent — said the notes caused “confusion, worry, or offense.”

Reading the notes may not reveal anything you don’t already know. But as one woman told KHN after reading nearly 4,800 pages of her notes, though she didn’t discover anything new or incorrect, she was very pleased to find times when her doctors had quoted her verbatim. “Just that level of detail made me feel like they were listening,” she says.

If you’ve read your clinical notes, or have tried unsuccessfully to get them, please drop me a note and share your experience.

You’re invited to visit my personal blog at www.themswire.com.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Sherri avatar


This was one of the best stories I've read about medical records, Ed! I have an entire four drawer file cabinet dedicated to mine. When I filed for long-term disability and social security, I turned in a large box of medical records in person to the local social security administration office. Included in those records were the doctor's notes from my neurologist who discussed in detail why it was time for me to stop working. That's something you don't get when medical records are requested without that added piece of information. I was approved for benefits the first time around, without having to hire a lawyer to fight it. It really was the doctors notes (two) and a bunch of medical records and MRI images (yes, I sent those as well) that made it easier to apply.

It also made me feel more connected with my neurologist after reading her notes. You could feel the compassion and urgency in some of her sentences. She also wrote that she was concerned I lost too much weight (that was a first for me). I've always had body image problems, but her words made me look at my extreme diet restrictions and make changes.

Ed Tobias avatar

Ed Tobias

Thanks for your comments, Sherri.

Your point about having the doctors' notes available when applying for disability is something that's never occurred to me. I'm sure that it will be useful to many who may need to go through that process someday. Dumping all of those records in the lap of the person in the Social Security office is an excellent idea!



Leave a comment

Fill in the required fields to post. Your email address will not be published.

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These audio news stories give our readers an alternative option for accessing information important for them.

Listen Here