As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.
I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL. I know I didn’t want to look down and read, it needed to come from the heart and what I could remember. I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking. Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.
There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.
Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not? I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy. I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.
There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented. How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear. Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.
Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years. Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.
Can you really understand concepts such as health, mobility or well-being without measuring or comparing them? See why Jamie argues that you can’t – and also why one’s “health span” may be more important than one’s “lifespan.” Click the image below to tune in.
*After clicking the image above, select the “08:45” link to your left to start the presentation.
I love the conveniences that come from having my data moved around online (with my permission, of course). For example, TurboTax will pull all my information from my investment bank and the IRS, and then calculate how much I owe. With me doing hardly anything, I’m done in about 20 minutes! Similarly, Mint.com can pull in my bank and credit card transactions to scold me about how much I’m over-spending on Amazon and restaurants.
Sadly, my healthcare data is not nearly as portable or accessible as my financial data. It’s a shame, because there are many talented people in health start-ups who want to build tools to help people make sense of their health data. It’s been 15 years since HIPAA was passed to promote this accessibility and portability of data, but many obstacles have gotten in the way of implementation: debates about data standards, the cost of updating information systems, debates about whether patients should really own their data and more.
This is exactly why the U.S. Department of Veterans Affairs (VA) should be commended. The VA cut through these obstacles and implemented data download for all the veterans using their “My HealtheVet” online health services portal. With the click of a single button, users can now download appointment information, medication histories, lab results and more. To date, nearly a half million veterans have already downloaded their data. What’s more, the VA is encouraging other health providers to follow their lead: they would love to see every health portal have a big, blue button that allows users to download their data with a single click. They are calling this the “Blue Button” initiative.
Blue Button is an ambitious undertaking, and we’re just beginning to understand its potential. However, Blue Button doesn’t necessarily make it easier for a patient to move data to other services. In fact, there are no data formatting standards for Blue Button, a decision meant to motivate providers to participate because they wouldn’t get bogged down in an argument about which standard is best (for example, Continuity of Care Document (CCD) vs. Continuity of Care Record (CCR).) This lack of standardized data output means it will be more work for any third-party services that want to import it.
Moreover, the VA’s implementation of Blue Button for My HealtheVet poses some additional challenges for data portability. The sample data export from My HealtheVet is just a free-text file with very little structure to it. While it is easily read by humans, it is not in a format that can easily be parsed by computer programs, such as XML or comma-separated-value (CSV) files.
To help facilitate the portability of the VA’s Blue Button download data, PatientsLikeMe is releasing an open-source Blue Button parser, which translates the free-text data file into structured data. Our goal is to make it easier for programmers to use this data for their own applications, or even for building tools to translate the data into a more established health data standard like CCD or CCR. Because the parser is open-source, it is not only free, but improvements made by any developers can be contributed back so that others may benefit. We believe sharing is a good thing.
There actually have been a couple prior attempts at parsing the My HealtheVet records to date. One person made a great start at an online tool for parsing My HealtheVet files. Also, Microsoft’s HealthVault service will read Blue Button VA files, but, as far as we can tell, the parser they use for this is not available as open source yet.
The lack of a defined data format “standard” for BlueButton frees us from endless debating over nuances of one standard versus another, but at the cost of data portability. PatientsLikeMe believes Blue Button can be even more powerful if patients have more options for what they can do with that data. By releasing a standard open-source parser, PatientsLikeMe hopes to give providers and other services a way to participate in Blue Button without worrying about the lack of definition.
What does this mean for patients? Hopefully we’re a little bit closer to all having a Mint.com for our health.
Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease). Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population.
ALS, which stands for amyotrophic lateral sclerosis, is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Some of the most debilitating symptoms include progressive weakness, atrophy, fasciculations (muscle twitches), dysphagia (swallowing difficulty), and eventual paralysis of all respiratory function. Other commonly reported symptoms are shown in the chart above.
Given the severity of ALS symptoms, the life expectancy of an ALS patient averages two to five years from diagnosis, according the ALS Association (ALSA). However, ALSA states, “The disease is variable, and many people live with quality for five years and more.” Rachael, who is six years post-diagnosis and living a busy, active life thanks to assistive technology, is a perfect example.
What does assistive technology entail? For many ALS patients like Rachael, this involves the use of medical equipment to aid basic functions such as:
How well do these interventions work? Click on each treatment name above to read evaluations from hundreds of patients about the effectiveness, side effects, cost and more. In addition to these various types of equipment, one of the most commonly reported treatments for ALS is Rilutek, the first prescription drug to be approved specifically for ALS. While it does not cure ALS or improve symptoms, it may extend survival or the time to tracheostomy (the creation of an artificial airway in the throat), which occurs when a patient is no longer able to breathe on his or her own. Currently, we have 1,124 patients taking Rilutek, with 293 treatment evaluations submitted.
What do patients say about this drug? We leave you with a sampling of comments that patients have shared on their treatment evaluations.
“One day I was having tremors in my left arm. I took the Riluzole [generic name for Rilutek] and one hour later the tremors stopped. I know it is helping.”
“I made a decision that 10% increased lifespan from onset was not worth being very sleepy all the time. I would rather require far less sleep each day than live slightly longer.”
“It is a slight pain because you’re not supposed to eat for two hours before or an hour after, and I’m trying to keep weight on.”
“I think this extended my time by at least six months. I started taking it about two months after my diagnosis. I’ve been told it’s more effective when you start taking it early like I did.”
“Quit taking due to elevated enzymes in my liver. Drug caused increased hunger, protein cravings, and very sluggish feeling.”
“Currently purchasing under Medicare as a tier 4 drug. When in the doughnut hole, the cost is approximately $985 per month.”
“We can never know if Rilutek does any of us any good. If it doesn’t seem to be doing any harm, I believe it is better to take it than not to.”
This is just a sample of the wealth of experience and data to be found at PatientsLikeMe. Dive in today to learn more about ALS.
First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ. Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness. It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well. In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.
Now, let’s take a look at the wealth of data found at PatientsLikeMe. To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19. What exactly are the symptoms of this condition? Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia. As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.
As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously. Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel. How well do these treatments work? Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.
Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts. We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:
“My manias last for about three to four months and are followed by depressions that tend to also last three to four months. Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”
“The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”
“Now I’m a little manic. I know what you mean about relentless depressions. I have those too. At the other end of the spectrum, I become psychotic. That’s the part that really frightens me and usually lands me in the hospital, or worse.”
“A month ago, I truly would have been leveled by all this drama. I’ve come quite a distance in a short period of time. You guys give me such strength. I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”
If you’ve got something to share about bipolar I as well, join the conversation today!
“Patients know what patients want to know.”
– Dave deBronkart
Blogger, author and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us.
You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe.After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis.He read that the median survival for his condition was just 24 weeks from diagnosis.Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.
Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support.For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data.He argues that only with complete data can a patient crack the code on his or her own health situation.As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.
To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below. (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” – another core value of our company. Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)
Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment. ”The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,’” he says. “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment. And when my side effects hit– the first was uncontrollable chills and shaking– I knew what is was. I knew what to expect, and I knew how other patients like me had gotten through it.”
Muscadol is an international brand of medication that combines acetaminophen, a widely used analgesic (pain reliever), with orphenadrine citrate, a skeletal muscle relaxant. It is used in the treatment of muscle spasm and tremors associated with various musculoskeletal conditions.
At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, only one patient reports using Muscadol in a dosage of “100 mg as needed.” Given the prevalence of musculoskeletal conditions – including fibromyalgia, sciatica and herniated disc disorder – we know there are many others who may have tried Muscadol to relieve their symptoms.
If you’ve been prescribed Muscadol or another anti-spasm/anti-tremor muscle relaxant, we encourage you to share your experiences (including side effects, dosage, effectiveness, cost and more) to help other patients. PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.
JOIN PATIENTSLIKEME TODAY
Have you taken Muscadol? Join PatientsLikeMe and add your experiences to our growing body of knowledge. Then, stay to exchange advice and support, research common treatments and learn from other patients like you.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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Conditions, Conferences/Events, Openness 
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