7 posts from December, 2008

Structuring and Presenting the Patients’ Perspective at AMIA

Posted December 15th, 2008 by

PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one.

Organized Patient ExperienceEarlier this fall, the venue for this conversation was the annual meeting of the American Medical Informatics Association (AMIA). Typically, AMIA is a forum for medical researchers to discuss clinical-facing informatics projects like electronic medical records, doctor decision-support systems, and standards. This year, the event agenda included its first-ever panel on patient collaboration, with PatientsLikeMe presenting on how our members use informatics systems to spearhead original research.I presented a paper co-authored with Michael Massagli chronicling the activity on the ALS site regarding the site-based evaluation of Lithium. Questions about the paper were enthusiastic and challenging as medical researchers contemplated the full implications of patients conducting research outside of the healthcare system. The most provocative comment came from Danny Sands of Cisco who introduced the possibility that while he saw the value of PatientsLikeMe, we may also be “polluting clinical trials” – when patients with rare diseases take experimental treatments before being enrolled in (his) randomized clinical trials. My response was that he and others in the clinical trial world may feel differently if someone he cared for was diagnosed with ALS – a disease where patients have limited time to explore treatment options. As medical researchers, we should be proud of our patients who are taking an active role in their health care; I know I am.

The truth is, whether practitioners discuss it or not, people have long experimented with novel, off-label, and alternative treatments (some with and some without their physicians). Barring the few cases that are published in academic journals, these individual efforts only resulted in a tiny group of people learning anything from their experience. By organizing these individual efforts, PatientsLikeMe allows the data to be pooled and recorded systematically for analysis.

Of course, randomized clinical trials (RCTs) are the most rigorous means to systematize experimentation, but they have their draw-backs. They are expensive to run, time consuming (they take years, our study took months), and may be subject to more confounds than their organizers would like to believe.

While coordinated patient-led research on PatientsLikeMe is new, and as such presents novel challenges in its methods and credibility, we have now glimpsed its promise, its potential. Lithium was a first effort to study one treatment in one condition; it is just the beginning. There are many other treatments being used listed on the site by our patients that are not – for a variety of reasons – being studied systematically anywhere else. For example: Low Dose Naltrexone (LDN), Stem Cell Transplants in ALS, 4-Aminopyridine (4-AP), Botox injections to manage excess saliva, etc. These demand our attention.

Regarding the Lithium experiment, one patient described the situation better than I ever could in this forum post: “This is an amazing process.  Instead of sitting on the sidelines searching for promising research we are for the first time ever (from what I can determine) taking a group of people with a particular disease and taking an active role in researching a treatment.”

PatientsLikeMe’s members are not only learning how to best care for themselves, they are contributing their otherwise anecdotal experience to a body of data. Motivated by their own desire for better outcomes, patients are reporting directly to the website and building a body of evidence not being collected anywhere else. Together, with our carefully designed tools to capture, display, discuss and analyze this data, we are creating a repository of patient reported outcomes that will add patient data to evidence-based medicine and advance our knowledge.  Isn’t that what it’s all about?

PatientsLikeMe member jfrost


Voices of Fibromyalgia: Q&A with Minnie Lee

Posted December 9th, 2008 by

PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site.

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picture-3.png (David) When were you diagnosed with fibromyalgia and when were your first symptoms?
picture-4.png (Minnie) I was diagnosed in late 2002.  However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000.
picture-3.png (David) How has fibromyalgia changed your life?
picture-4.png (Minnie) On its onset, the changes were negative.   I couldn’t engage in my usual social activities and I was getting sick more often than I was used to.  It was a shock to me, having always been such a healthy person all my life.  I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant.  That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better.  It has given me purpose in life – to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage a fairly active and busy lifestyle– from having a full-time job to training for triathlons– I did have to make certain adjustments in my life to make sure I can work within my limitations.  First of all, I had to make the huge adjustment mentally to be ok with admitting that there are just certain things I can’t do.  For a type A person like me, it was one of the most difficult things I had to change (and it took a while).  I limit the number of errands I run in a day, even if I have a much longer list of things to do.  I spread them out over several days – which requires planning some things ahead.  To ensure I get good sleep (in both quality and quantity) to accommodate my training regimen, I make choices every day that make sleep and rest a priority.  If this means limiting my social engagements and having to cancel certain commitments, so be it.  I also had to make a mental shift at work to not get as affected by stressful situations, which has helped me greatly.
picture-3.png (David) What motivates you to train for triathlons and half-marathons?
picture-4.png (Minnie) There are three major factors that motivate me. First and foremost, this was my promise with God – to turn this negative situation around into a positive one.  I made a promise to swim, bike and run to not only help myself but to help others find hope in their every day lives.  Secondly, it is my fellow patients that motivate me to get up and moving.  I know there are people out there whose conditions have gotten so bad that they cannot engage in any kind of exercise.  I can’t imagine the pain and suffering they go through, and I want to dedicate my races to them, while giving hope to others that anything is possible.  I know that these endurance races are a rather extreme measure to promote the benefits of exercise, but I think by doing something extreme I can make a better point about what we’re capable of.  (If I can do a triathlon/half-marathon, you can definitely go for a walk and see how you feel!)  Lastly, my motivation is my own past.  Four to five years ago I was drowning in self-pity, dependent on muscle relaxants and pain killers, spending a lot of my leisure time in bed, and was frequently missing work enough to make me feel concerned about keeping my job.  They were some of the darkest days of my life.  Now, all I have to do is remember those days to get myself moving on a tough day.
picture-3.png (David) How do you see PatientsLikeMe helping the fibromyalgia community?
picture-4.png (Minnie) Launching a community site for fibromyalgia on PatientsLikeMe has significant meaning.  First of all, it adds to the recent recognition the illness has been gaining in the medical community.  It is time for any discussion of this illness being real or not to be over and done with.  Secondly, and more importantly, it has massive potential of being a crucial resource for patients that lack information and options about their conditions, by having every possible symptom and treatments laid out in one central source.  Additionally, patients can and will find friends that understand what they go through (and we don’t have many of those, because fibromyalgia is still a foreign language to many people).  Another amazing possibility is that this can be a great source for doctors, because knowledge and understanding of fibromyalgia among doctors can always be improved.  This can be the perfect linkage between patients, their support system and health care professionals.  I can’t help but be so enthused and excited about this endeavor PatientsLikeMe has set forth.  They are bringing such a helpful platform of information and communication to the fibromyalgia community.  Thanks!!!!