2 posts tagged “patient blog”

The OpenNotes movement: Your right to read your doctors’ notes

Posted 9 months ago by

Have you ever seen your doctor’s clinical notes about you? (We’re not talking about your brief ‘after-visit summary,’ but the detailed notes the doctor or other healthcare provider writes later on.) PatientsLikeMe member Liz (thelizarmy) recently talked with us about OpenNotes, a movement to give patients easy access to their providers’ notes – like her 4,000+ page file documenting her treatment for brain cancer and seizures. And member Danny (Dvanleeu), who’s living with multiple sclerosis (MS), shed light on what he’s learned from OpenNotes.

HIPAA (the Health Insurance Portability and Accountability Act of 1996) gives you the right to review your medical record, including healthcare providers’ notes with very few exceptions (such as some sensitive mental health notes). But few patients know about their doctors’ notes and their legal right to access them.

What are visit summaries vs. notes? What is OpenNotes?

For starters, it helps to know some lingo:

  • After-visit summaries are more well-known but they’re different from notes. An after-visit summary, also called a clinical summary, typically includes some basics like your weight, blood pressure, recent symptoms or problems, current medications, allergies, and instructions for new aspects of your treatment. Providers may offer a printout of your after-visit summary at the end of your appointment and/or include it in your electronic health record (EHR) and make it available to you through an online health portal.
  • Notes are the doctor’s or provider’s more in-depth documentation, reflecting the conversation you had with your clinician and a summary of the most important information discussed. Notes are not usually readily shared with patients. Advocates of easy access to doctors’ notes say the notes can help patients engage in their healthcare and spot medical errors in their records. Although patients have the right to review their notes, retrieving them through traditional method can be tedious, time consuming and patients often have to pay hefty fees for copies.
  • OpenNotes (www.opennotes.org) is “the international movement dedicated to making healthcare more open and transparent by urging doctors, nurses, therapists, and others to share their visit notes with patients.” OpenNotes is not software or a product, but rather a movement to support patient access to information. It started in 2010 with three hospitals and has grown to include more than 100 hospitals or medical systems (see a map of OpenNotes participants). Read some FAQs about OpenNotes and watch videos about patients who’ve received their notes.

Liz spreads the word on OpenNotes

PatientsLikeMe member Liz (pictured above), who’s living with brain cancer and epilepsy, was featured in a 2016 documentary called The Open Patient. The short film highlights the importance of patient access to data and the mission of the OpenNotes co-founders, a Boston-area doctor and nurse.

“It wasn’t until the documentary was released that I learned about OpenNotes, and I suddenly realized that after living with brain cancer for nearly seven years I had never seen my notes,” says Liz, who lives in California. “This was shocking to me. I thought I knew everything there was to know about my diagnosis and care.”

Liz says she learned she has an astrocytoma (a slow-growing but malignant brain tumor) after she suffered a massive seizure in July 2008—a week after her 29th birthday. She has been through a “whirlwind of medical experiences,” including multiple brain surgeries, struggles with seizures, relearning how to walk and balance, and 24 months of chemotherapy.

“There really is no right way to respond to a cancer diagnosis, but my way is through curiosity,” Liz says. Shortly after her diagnosis, she joined PatientsLikeMe and also started a personal blog about her experiences, self-care and advocacy called The Liz Army, which now gets about 30,000 visits a year.

Liz recently joined the staff of OpenNotes as Senior Multimedia Communications Manager. Part of her role involves sharing the stories of patients and providers on the blog, The Same Page.

“I think most patients have no idea our doctors keep such detailed records about our visits,” Liz says. “That’s a bummer. I think people would be really interested to know what the doctor is thinking and would come to trust their provider more.”

Liz only recently saw her clinical notes for the first time, when she had to rebuild her healthcare team due to a change in insurance. “Had I asked for my record to be printed, it would have cost me $735.40,” she says. “Instead I got my record on three DVDs, which cost me $45. I was curious, so I put one of the DVDs into my computer and I found a 4,836-page PDF file that was my record.”

Finally seeing her notes “reinforced that my doctors were listening to me,” she says. Her new care team doesn’t yet participate in OpenNotes, but Liz used OpenNotes materials (Ask for your notes!) to ask each of her doctors to share notes with her. All have agreed.

“Now that I’ve seen my notes, I know what I am missing, and I don’t want to go back to just seeing after-visit summaries, which include only the most basic information like height, weight, BMI, blood pressure. I mean really?” she says. “Where is the info about epilepsy and brain cancer? You know, the real reason I am at the doctor.”

Quality matters: Danny’s experience seeing his notes

PatientsLikeMe member Danny was diagnosed with MS in 2009. He’s worked as a nurse for 43 years in a variety of specialties. Upon his MS diagnosis, he was glad that his doctors connected him with an electronic health portal where providers’ notes are shared.

“While I’m thrilled to have access to their notes, I’m not so impressed with their notes,” Danny says. For example, they can contain mistakes (in his case, his records say he experienced chest pain for years – an error that apparently got copied and pasted many times over). He also says it’s hard to find information that feels relevant to him, such as how he’s doing, if his condition is progressing and how to manage personal goals, practical issues and fears that arise as a patient.

Patient input in the notes would be great, since they’re about the patient, Danny says.

Still, Danny appreciates the access to his notes and encourages people to see as much of their records as they like. “They have the right to it and they should go for it,” he says. “The law is that it’s your data.”

The team at OpenNotes say they’re studying note-writing and working on materials to help clinicians write better notes for themselves and their patients. With that goal in mind, in 2018 they’re launching pilots at four hospitals across the country, where patients will be offered the opportunity to contribute to their own notes. Getting the notes “open” is an important first step toward all kinds of other healthcare transformation, they say.

Did you know about providers’ notes and have you seen them or tried to see them? Would you want to review your notes? Join PatientsLikeMe to share your experiences or thoughts here with the community.

Share this post on Twitter and help spread the word.


Spotlighted Blogger: Bipolar Patient Andrea of “Lithium and Lamictal”

Posted December 8th, 2011 by

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

Bipolar Blogger Andrea of "Lithium and Lamictal"

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.