5 posts tagged “openness about diagnosis”

Why these 5 Olympians with health conditions are #1 in our hearts

Posted February 28th, 2018 by

The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden.

U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes of vomiting and severe weight loss and has been hard to diagnose. She had three abdominal surgeries and has shown her scars on Instagram.

After a long and painful recovery, Alexa was able to return to skating. “My whole outlook changed,” she told Team USA. “I was grateful to have the chance to fall instead of stressing out over falling or not. Was a fall as big of a deal as a drain getting pulled out of me? No, not at all. I was grateful.”

In PyeongChang, Alexa and her husband/skating partner, Chris Knierim, took home the bronze medal in the figure skating team competition and placed 15th in the pairs competition.

Alexa shared this photo with SELF for a video about her health problems and extraordinary road to the Olympics.

American long-track speed skater Brittany Bowe sustained a concussion when she collided with another skater in 2016. Later, after fainting multiple times, she was diagnosed with post-concussion syndrome and a lesser-known condition called “POTS” or postural orthostatic tachycardia syndrome. POTS can be a years-long or potentially lifelong condition, and it affects the body’s ability to control blood pressure or heart rate as it should when you stand up, which can cause dizziness, lightheadedness or fainting.

“There would be times where people I’d not seen in a while [would say], ‘Oh you look great, you look so healthy…’ And I’m just dying inside because I know my head isn’t on my shoulders where it normally sits,” Brittany said in a video she shared on Instagram. (Her comments reminds us of what many patients with invisible illness hear from “the normals”: “But you look so good!”). She received specialized care and coaching for people with POTS and was able to qualify for the 2018 Olympics.

Canadian snowboarder Spencer O’Brien started feeling serious joint pain and stiffness in late 2012, and she originally attributed it to normal wear and tear from her sport. It took until 2014 to get the right diagnosis (rheumatoid arthritis) — and she went through bouts of depression before finding out what was wrong.

“A big lesson I learned during that experience was to be an advocate for my health,” Spencer told The Inertia. “I think our intuition is so strong, like I knew something was wrong with me beyond the injuries, and I did voice that, but we ran a number of tests, which came back clean.” She had to push for additional tests, which pointed to RA and helped her get on the right track with her treatments so she could continue her sport.

U.S. cross-country skier Kris Freeman was diagnosed with type 1 diabetes in 2000 (at age 19) after a routine blood test run by a U.S. ski team physiologist. PyeongChang was his fourth Olympics appearance. During the 2006 Olympic Games, The New York Timesprofiled Freeman and his unique treatment/training regimen. (Little known fact: Insulin is on the anti-doping list, and athletes who need it for medical treatment, like Kris, have to apply for a waiver — “one more hurdle that comes with managing diabetes,” The Times noted.)

“The last few years have been tough with some pretty public setbacks with my diabetes,” Kris told Lilly Diabetes (he’s a speaker at their diabetes summer camps for kids). “But, I’ve been able to stay positive and maintain my nutrition and overall diabetes management, which has helped me tremendously. I want to show everyone, especially children, that they can and should keep reaching for their dreams.”

Marc Oliveras, an alpine skier from Andorra, was diagnosed with lupus (SLE) in 2014 and took a break from his sport so he could treat the autoimmune disorder, which was affecting his skin, kidneys and blood. “After a long recovery and a difficult summer, where I had to start first knowing the unknown [my disease], being able to compete is already a reward,” he said in his athlete profile.

It’s worth reading The Mighty’s article to the end, because the author reminds people living with health conditions that everyone’s illness and situation is different: some people may have milder forms of a disease, respond better to treatment, or have better access to world-class care.

Also, the media tend to share a boiled-down or glossed-over features on athletes triumphantly “overcoming” their condition, rather than showing the everyday challenges or realities of managing their condition while training for their sport. Fortunately, athletes like the ones above are raising awareness: they’ve lived, breathed and trained with their condition, and they feel grateful to even be able to compete. That kind of perspective is pure gold.

Do any of these quotes or stories strike a chord or inspire you? Join the conversation on PatientsLikeMe.

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

Posted December 21st, 2017 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.

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