Research

A new gene for ALS: What sharing your genetics could mean for research

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS, FALS). Until today, there was only one major causative gene that we knew about, called SOD1, which accounted for 20% of familial cases. Today’s new discovery of the gene FUS (also known as ALS6) accounts for an additional 3-5% of familial cases and was the result of an international collaboration between scientists in Boston, London, and Sydney. This is very exciting for research because the more we know about what causes ALS, the better our chances of finding an effective treatment through better understanding of the pathways involved in motor neuron degeneration. Here at PatientsLikeMe, we’ve recently upgraded our ALS platform to capture data on familial ALS patients’ known genetic mutations. The goal is to help familial ALS patients find another patient like them, and to enhance understanding of the phenotype of each mutation, e.g. if different types of mutation cause a faster or slower …

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ALS Symposium 2008: New features for ALS patients

This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had developed for patients with the condition. This year, as part of a session on the history of ALS/MND patients online, I was given the opportunity to show attendees some of the improvements we had made to the site since that time. * Percentile curves for patients with PLS – When I said that we had more than 100 patients with PLS registered on the site, there was a collective gasp from the audience. Our large sample has allowed us to show PLS patients how they compare with other PLS patients for the first time. (Available to PLS members of the ALS/MND community) * Geomapping – Patients on our system can see a map of the world and see registered users nearby using a Google Maps API developed by our resident geomapping whiz Steve Hammond. This allows patients in isolated areas, or even busy cities, to …

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ALS Symposium 2008: A history of ALS online

Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK.  As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the past, present, and future of the internet for patients with ALS/MND. As you will see in the presentation, there has been a strong online presence in the ALS/MND world since the early 1990s. Over time, the proportion and representativeness of the patients participating has increased dramatically, to the point that we now have some 10% of the USA’s ALS/MND population registered on the site. Next up in our series…a blog post looking at some of our recent improvements to PatientsLikeMe for people living with ALS/MND.

Structuring and Presenting the Patients’ Perspective at AMIA

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. Earlier 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 …

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World AIDS Day (12/1/08) – Embracing the Positive

World AIDS Day is a milestone in so many different ways.  It has marked the persistence of HIV and its impact on our world, but we hope that we are approaching a turning point where World AIDS Day will come to mark progress. What this day marks, however, is that being HIV positive doesn’t mean one will automatically get AIDS anymore.  People are living longer and medications continue to improve the health and quality of life for people with HIV.  There’s still a long way to go, but progress is being made. A year ago on this day, the PatientsLikeMe HIV Community was open to a small group of beta-testers, and one of them asked in the Forum if people in the world-at-large even take notice of this day, or have any idea what it means for people with HIV?  Now, we have over 1,600 patients who are sharing their experience, giving each other needed information and support.  And they are using PatientsLikeMe to empower themselves to show the world on World AIDS Day and every day that there is life with HIV. To learn more about our online community, check out our “2008 HIV Community Report:  Embracing the Positive.”

National Family History Day

PatientsLikeMe believes in the benefits of openly sharing health information.  That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008. As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations.  At PatientsLikeMe, we encourage everyone to take advantage of the family time to identify, discuss, and make a written record of family health problems.  Many health disorders such as ALS, Parkinson’s, Multiple Sclerosis, heart disease, stroke, and diabetes, run in families and across generations. Knowing your family history gives insight into your current health status, and lifestyles and environmental factors that may affect your disease risk. While there is talk of personalized medicine being on the horizon, collecting and interpreting family history information is a currently available, and practical personalized health tool. Health care professionals can use this valuable information to design individualized care programs to reduce risk of disease and promote overall health. So while you’re eating that feast and the leftovers this weekend, ask your family about their health history.  It’s good conversation and can help everyone.  Happy National Family History Day!

PatientsLikeMe Report: MS Patients Still Positive for Tysabri Following July Announcement of PML Cases

PatientsLikeMe recently released a new PatientsLikeMeListen™ report: “Did the July 2008 PML announcement affect the Tysabri brand?” Among our findings, the report reveals that MS patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases. When we originally covered this topic back in August,  the discussion among our members was just starting to heat up.  This report analyzes the patient perspectives shared on our site after the initial PML announcement, and shows how they are empowered to educate themselves about this topic.  Take a read and let us know what you think!

PatientsLikeMe honored with award of distinction at Ars Electronica

Ars Electronica – one of the foremost centers for art and technology – honored PatientsLikeMe at their annual festival with the Award of Distinction. The Prix Ars Electronica is one of the most prestigious prizes in the fields of media, technology, animation, and interactive art. This year, there were a record number of submissions with 4,056 overall.  More than 220 online communities were competing in the newest category: Digital Communities. Previous winners in this category include Wikipedia, Free Software Foundation and Akshaya.net. While PatientsLikeMe has been honored and cited for its innovation in the area of health and medical research, we were thrilled to be recognized directly for our social and artistic value. Central to PatientsLikeMe, and what drew many of us to work here, is our commitment to empower individual patients to become informed, engaged participants in both their own healthcare and in the creation of new scientific knowledge. This prize attests to our contribution in this area. At PatientsLikeMe, as an inter-disciplinary team of researchers, designers, and engineers, we are building a platform for patients to both share and use health data.  Our goal is help patients leverage their own experiences to make good decisions and improve outcomes.  …

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How representative are PatientsLikeMe patients to the general population?

Mimi Yin over at The Common Data Project blog posed some interesting questions about data in our communities: Back in April, I wrote about the site PatientsLikeMe.com, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool of invaluable information that is publicly available. However, I also wonder about how their data may be skewed because their users are limited to the pool of people who are comfortable sharing their HIV status and publicly charting their daily bowel movements. The question we have for PatientsLikeMe is: Who isn’t being represented in your data set? And how does that affect the relevance of your data to the average person who comes to your site looking for information? Who won’t find your data helpful because it’s not relevant to their personal situation? First of all, Mimi brings up outstanding questions.  Let’s take the overall philosophy first, openness.  PatientsLikeMe is built around the idea that patients can drive their own health outcomes through sharing their health information.  This is a movement away from privacy as a paradigm for health management.  That being the case, the …

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Bringing you Medicine 2.0

Last week, PatientsLikeMe presented a keynote address at the inaugural Medicine 2.0 Congress in Toronto, Canada in front of 200 researchers from 20 countries. A new, annual international conference on Web 2.0 (social web) applications in health and medicine, this year’s event was centered around the theme: “Building Virtual Communities and Social Networking Applications for Patients and Consumers.” You can view the entire conference proceedings online.  The event is organized by Gunther Eysenbach, MD MPH, who is the editor and publisher of the Journal of Medical Internet Research, where Jeana Frost and I recently published our paper – “Social Uses of Personal Health Information Within PatientsLikeMe.”  This was a great opportunity to update the research community on how our patient members are engaging in data-driven discussions about their health.  In my presentation, I gave an overview of the site, summarized some of our published research results, and provided examples of how patients are using our forum and profile comment tools to better understand their own and other’s experience of symptoms and treatments.  What really impressed this audience is that PatientsLikeMe is delivering the best of what “medicine 2.0” can potentially deliver to the healthcare consumer, and patients are using it.  …

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