Columns The MS Wire - A Column by Ed Tobias What’s Your Doctor Writing About You? Ask to Read the Notes What’s Your Doctor Writing About You? Ask to Read the Notes by Ed Tobias | June 25, 2019 Share this article: Share article via email Copy article link 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 storyĀ 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 OpenNotesĀ 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 whoād looked at their doctorās 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 ā from 1 to 8 percent ā 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. āJust that level of detail made me feel like they were listening,ā 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. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. Heās also the author of āThe Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.ā Ed and his wife split their time between the Washington, D.C. suburbs and Floridaās Gulf Coast, trying to follow the sun. Tags access Comments Sherri 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. Reply 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! Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
April 26, 2024 News by Margarida Maia, PhD Employment, income drop steadily over 2 decades after onset of MS
April 26, 2024 News by Marisa Wexler, MS Machine learning model predicts CIS to MS conversion risk: Study
April 25, 2024 Columns by Benjamin Hofmeister Finding safety while living with the constant threat of MS progression