The Value of Openness: The PatientsLikeMe Blog

One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that could be embarassing.

We recently published a paper in the European Journal of Neurology that’s a great example of this. For many years doctors have known that a small number of patients with ALS (~5%) develop frontotemporal dementia, which causes personality changes, unusual behaviour, and severe cognitive problems. A larger proportion (~33-50%) suffer much milder cognitive problems, such as getting words “stuck on the tip of their tongue”, finding it difficult to multi-task, or difficult to plan complex sequences of events like planning a vacation. A recent review in Lancet Neurology gave a thorough run-down of the literature, the ALS Association has published a guide for families, and there have even been two conferences held just on this topic.

Despite this, our study of 247 ALS patients found that:

• 85% of patients were told they might experience problems walking
• only 11% were told they might experience cognitive change
• The patient literature around ALS continues to promote the myth that “the mind remains unaffected” in ALS.

Doctors may feel that they shouldn’t burden families with knowledge about a symptom that may never affect them, but we found that most patients and carers would have liked to have been told. It’s not even clear that witholding the information had much effect anyway, as many respondents reported having found this out through other sources, regardless of what their doctor had told them. One caregiver told us:

My husband… had uncontrollable crying the last few months of his disease, as well as frontal lobe confusion. This was not ever discussed with the neurologist, but when I called about it I was told that it does happen sometimes with this disease… I called the doctor to be told it sounded like the frontal lobe thing. I think doctors need to do a better job educucating the patient throughout about all possibilites of what could happen so the patient’s caregivers aren’t so helpless.

Whilst we understand that healthcare professionals are doing their absolute best to manage people’s expectations and fears about their disease, it seems clear that when it comes to patients accessing information about their disease, the genie is out of the bottle. Now that doctors are no longer the sole conduit of specialist knowledge we need to have a dialogue about how to help patients get the best outcomes.

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community includes over 1650 patients, the U.S. members represent over 4% of all the ALS patients in the States.

Over three quarters of our members have entered substantive information about their treatment history and status. Each time a member adds information, that information benefits how other people care for themselves and heightens how we as a community contribute to medical knowledge and drug discovery.

Already we have published exciting findings from our community. For example, hundreds of ALS patients completed Paul Wick’s survey on Excessive Yawning and the results were published in a psychiatry journal (Acta Psychiatica Scandinavica). Another exciting development in ALS is first real time drug study - on the use of Lithium in ALS. More published and presented research will soon be featured on our blog and in a new section on the site. Each project demonstrates how we, as a community, can conduct research quickly and easily to accelerate the pace of gathering and disseminating new knowledge. SO THANK YOU.

To show you how the research process works and to celebrate our second anniversary, we have put together a report on our ALS community. In it we observe that the community is a good one to study in that it looks a lot like the ALS patient population at large. As is true for ALS generally, there are 3 men for each 2 women in the community and mostly sporadic cases (8% hereditary, 92% sporadic). And, PatientsLikeMe members experience all types of onset with the most common being leg and arm onset (39% and 37% respectively). The only real difference is that site members are a little younger than the average (48.4 at onset on the site compared to 55 generally). In the report, we also looked at how different ways to better understand ALS and connect patients. In the figure below, we look at the relationship between age at onset and onset type. Separating each age group, we see whether different types of ALS present themselves at different times of life. This can contribute to scientific understanding of the disease. Arm onset appears to affect slightly younger people than bulbar and leg onset. Also, when each number in the chart is a link on the site, it will help you locate others like you and of interest to you. See the next figure. We also report early stage research of our own. Specifically, we look at how patients are utilizing health services and how our members with different types of onset are doing over time. One surprising finding is how long some people report between experiencing their first ALS symptom and receiving a diagnosis. In the figure below, the most common length of time between onset and diagnosis was 12 – 18 months. There are also a number of patients who did not receive a diagnosis for several years. We are going to do some more research into these results.

Lastly, we begin to look at how ALS differs by onset. We see from our user reported Functional Rating Scale that bulbar onset patients experience a faster decline than users with arm or leg onset. People with bulbar onset experience the same level of decline in 8 months as leg and arm onset patients experience in 16 months.

Through member participation, we are gathering the information we need to better understand the course and characteristics of ALS. At the same time, we are creating methods to use patient supplied data to discover and evaluate the effects of new possible treatments. If you are an ALS patient or caregiver, please take a look at the full report (Note: you must be a registered user).

by James Heywood

Update (March 7, 2008):  PatientsLikeMe ALS Lithium Research released.

Does it work? 
On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is fair to say this paper includes the most promising suggestive set of data from a clinical trial ever published. I say “suggestive” because there are many flaws with both the information presented and with the publication process itself. These flaws make it so that patients and their doctors are left trying to draw conclusions about the use of Lithium to treat ALS, without actually having any realistic confidence in the data or its meaning.

For a patient, there is genuine risk either way. Lithium is not a harmless drug, and, although it is widely used, it can have significant side effects if it is not monitored properly. In addition, the reality is that in several of the last clinical trials in ALS, including minocycline and topiramate, the patients in the treatment group did worse than those in the control group. So, fears about the risk of an unproven drug are well founded. However, there is also the risk of doing nothing. If the paper turns out to be even half true, the effect on the progression of the disease could be dramatic.

We also must consider the consequences of waiting for more information. For someone with a life expectancy of several years, the consequence is obvious. Unfortunately, the harsh reality is that the traditional medical research system will not provide any better data to patients for at least 2 years – that is, 6 months to start a trial, 15 months of evaluation, and 3 months to share the data. In fact, 2 years is being optimistic, if truth be told. History teaches us that it will most likely be much longer.

History also teaches us that patients sharing stories with each other will not answer the question alone. Chinese stem cells, herbal supplements, nutraceuticals — all have been discussed extensively on the internet with some claiming cures and some describing great harm; yet we have no definitive answer. Despite the thousands of postings, very little knowledge has advanced the treatment of ALS, and patients are still left unable to make effective treatment decisions.

We can and will do better
PatientsLikeMe was built to solve this problem and accelerate the transfer of knowledge about what works and what does not. Today, PatientsLikeMe has data on the progression and history of more than 1600 ALS patients - twice the number in the largest ALS trial in history. Even before the trial results were published, 50 patients worldwide who had elected to start taking lithium, in collaboration with their doctors, have been tracking their progression and blood levels on PatientslikeMe. This is more than twice the number of patients participating in the trial itself! We have data on historical forced vital capacity, the ALS Functional Rating scale, and a full symptom battery for most of the patients who have started, as well as for all the other non-lithium users in our system.

PatientsLikeMe is committed to solving this problem. We are collaborating with Humberto Macedo, a patient, and Karen Felzer, who’s father has ALS, to recruit all patients taking lithium. Together, with all the patients involved, we will run the first real-time, real-world, open and non-blinded, patient-driven trial. We believe we will have the power, within months, to begin answering the question of how much lithium modifies the progression of ALS. Unlike a blind placebo control trial, we are watching the use of this drug in the real world, and because of the number of patients and our system’s sophisticated data modeling, we can determine the significance of each reported change in each patient as he/she deviates from his/her predicted course. There are many risks to our approach, patient optimism, the placebo effect, uncertain quality, and many other variables will compromise our data. Despite these, and many other challenges, we remain committed to solving this problem.

Our Pledge to ALS Patients
We will use all our shared patients’ data to determine, to the highest predictive power possible, the effect of lithium on ALS patients in the real world. We will share that information in real time with all patients. We commit to displaying that information in a realistic manner that communicates the true confidence and uncertainties it contains. We will build a platform that allows patients, doctors and researchers the ability to drill down into all of the data in the system, to each and every data point, so that they can trust that our analysis is based on what really happened. We commit to engaging in an open and productive dialogue about our methods, so we can all learn to do this better – today and tomorrow.

What you need to do
Regardless of whether you take lithium or not, we need your data. The more patients that share their information, the more power we have to detect the effect of lithium, or any of the other 800 treatments in our system. We encourage all patients, including those who have chosen on their own in effective consultation with their doctor to take lithium, to join PatientsLikeMe and share your data with the world. We do not encourage any patient to start taking lithium. As noted above, all drugs have risks and, in general, ALS patients have experienced more harm than good trying experimental treatments. It is important to note that, either way, you help if you participate, because the more data we have, the more ability we have to answer the question of what’s working.

Realistic Hope
In the 9 years since my brother, Stephen, was diagnosed with ALS, we have been through so many cycles of hope and disappointment. We have tried treatments that turned out not to work, and we have tried treatments that were and remain unproven. Each time, we approach the data with a little more skepticism, as each time before it has been proven to be wrong. Someday a treatment will work. I hope and pray that lithium is the one, but I am realistic given the failures of the past. The realistic hope of PatientsLikeMe is that together we can accelerate the day when we know. We know most patients use PatientsLikeMe because they want to talk to someone like them and support their friends, they use PatientsLikeMe to share their insights; they use PatientsLikeMe, because, without question, we improve patients’ quality of life through the sharing of information. We value that greatly, but we also have higher goals, Today, we start achieving them. Today, we allow patients to begin to answer how to treat ALS, and that will help us answer it for all diseases.

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.

To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.

In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.

The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself - the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.

If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.

Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site!

Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for us were:

- Do people really want to know about their progress?: Our answer would be that PatientsLikeMe allows them the option to find out if they choose. Many professionals feel that it is their responsibility to protect patients and carers from distressing information. However, we believe that everyone’s information-seeking preferences are different and by giving people the choice we are empowering them.

- Don’t you get a lot of people pushing their products?: We have a few ways of preventing this. First there is our community of members, who are a very switched-on group. If anybody posts something suspicious or overtly commercial we normally hear about it in a matter of minutes and are able to respond appropriately. Secondly we have a clear emphasis on sharing what has been helpful, but we ask people not to try and persuade others to change their regime; that is a choice for them to make. Finally, by giving patients the tools to look at each other’s outcomes, we encourage people to put their data where their mouth is. If “supplement x” has worked wonders for them, we would encourage them to enter in their data so other people can see for themselves.

- What does this cost patients?: Nothing! Because our business model involves partnering with pharmaceutical companies to encourage their participation in disease communities, we don’t have to rely upon advertising, spam, or subscription fees to sustain our activities. We feel that being a neutral space from the perspective of industry and non-profits is best for everyone.

- Can we tell our patients about this?: Sure! We’d like nothing more. In the new year we’ll be distributing leaflets to all the ALS/MND clinics we can find so that they can invite patients and caregivers to join us.

On the penultimate day of the conference, one of our research team, Paul Wicks, gave a platform presentation describing PatientsLikeMe and presenting some of the research that’s been carried out on the site.

His talk was met with an enthusiastic response and was identified as a highlight of the symposium by several delegates. Click the video below to hear Paul take you through his eight minute presentation.

Without doubt, one of the most inspiring parts of any conference is meeting up with our users, and we were thrilled to see a few of them at the conference. We heard how PatientsLikeMe helped them understand more about their condition, meet other users in their area, and made them feel like they were a part of the fight against ALS/MND. Next year the conference is in Birmingham, UK, and we look forward to having lots of ground-breaking research to show off there!

PatientsLikeMe, the leading treatment and outcome sharing community for people with life-changing conditions, has released the most comprehensive real-world treatment and symptom dataset on ALS (Lou Gehrig’s Disease) and Multiple Sclerosis (MS). Previously, similar real-world information would have had to be mined and aggregated from proprietary sources such as hospital systems or insurance companies. Now, anyone can go to PatientsLikeMe.com and search for a particular treatment or symptom to find out the experience of over 2,300 patients. This unprecedented database includes medication dosage ranges, lengths of time on a treatment, reasons for discontinuation, symptom severity, and other key experience measures on over 1,300 treatments and 300 symptoms. Learn more….

The first thing we experience about yawning is an urge to do so, one that can be so hard to suppress that we end up gulping down an extra serving of air when we’re trying to appear interested, or polite, or awake. But what if you yawned even if you weren’t tired, or bored? What if you got attacks of yawning six, seven, eight times in a row that you couldn’t stop? This can be a problem for some patients with ALS, and it’s made worse by the fact that due to weak jaw muscles they could dislocate their jaw.

That’s why I was particularly interested when a news report on PatientsLikeMe listed “increased yawning” as a symptom of ALS. It occurred to me then that we had in front of us the perfect way to investigate excessive yawning in more detail. The first step was to set up “excessive yawning” as a primary symptom in ALS, meaning that all new members would be rating whether they felt it was mild, moderate, or severe. Coincidentally, a paper had just come out which reported two patients (not with ALS) with excessive yawning after being prescibred an SSRI antidepressant drug. We now had a couple of different hypotheses we could test out; first that yawning in ALS was associated with respiratory funciton, second that it was associated with SSRI use, and third that it might be something to do with emotional lability. I took the new publication as an opportunity to write a letter to the editor on the subject. I wrote:

254 patients (47%) completed the survey on excessive yawning. Excessive yawning was reported to be absent in 75 patients (30%) mild in 75 (30%), moderate in 81 (32%), and severe in 22 (9%). Using Spearman’s Rho there was no correlation between severity of yawning and age (r = −0.63, P = 0.329, n = 244) months since diagnosis (r = −0.032, P = 0.619, n = 250), or the last recorded measurement of forced vital capacity (r = −0.136, P = 0.99, n = 148). There was no association between yawning severity and anti-depressant usage (χ² = 3.269, P = 0.352). However, there was an association between yawning severity and site of onset (χ² = 18.705, P = 0.028). Patients with a bulbar onset of disease were more likely (57%) to have moderate or severe yawning than patients with an arm onset (42%) or leg onset (31%).

So, from this data it looks like we can reject hypothesis one (breathing) and hypothesis two (SSRI use). But what about emotional lability? The reason I thought it might be a factor is that, much like uncontrollable laughter and crying, people yawned even when they weren’t sleepy and had difficulty with inhibition. Emotional lability is also found to be much more common in the bulbar-onset form of ALS relative to limb onset forms. Our own stats show a moderate but significant correlation between the two symptoms (r=~0.3) , and at the recent ALS/MND International Symposium in Toronto one of the speakers mentioned that they also consider yawning a sign of lability.

Why is all of this important? For one thing, the fact that yawning can be painful for ALS patients means we should try and stop it, but our discussions on PatientsLikeMe brought to light another reason entirely: people were losing friends because of it as they were intepreting their frequent yawning as a sign of boredom or rudeness! So, my interest now is for two things to happen; first for patients and healthcare professionals to be more sensitive to the presence of excessive yawning and clarify to patients that it can be a symptom, and second for researchers to investigate potential treatments that might target emotional lability and excessive yawning in order to improve the quality of life of our patients.

PatientsLikeMe, the leading treatment and outcomes sharing website for people with life-changing diseases, is proud to announce its first scientific poster award. Today, at the 20th anniversary meeting of the British Neuropsychiatry Association (BNPA), Dr. Paul Wicks, resident researcher at PatientsLikeMe.com received the Association’s first prize for the best poster presentation, entitled “Telesocial medicine for neurological disorders: PatientsLikeMe.com”.

“This is the first time that PatientsLikeMe.com has been formally presented at an academic conference and it’s great that the site has received the recognition it deserves,” says Dr. Wicks. “Over the two days of the conference I’ve spoken to neurologists, psychiatrists, and patients, all of whom were enthusiastic about the concept and interested in the development of the site as it branches out to include conditions as diverse as ALS/MND, Parkinson’s disease, and multiple sclerosis.”

The poster illustrates the power of PatientsLikeMe and how it can help patients with neurological disorders take control of their diseases and improve their understanding and knowledge of treatments.