Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior.  This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings.  For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition.  That is – until they joined PatientsLikeMe.  Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, the more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.

Do you agree that having friends with the same condition – either online or offline – has affected your experience for the better?  Share your thoughts in the comments section.

Why does this topic merit its own conference? Well, as we learned at PACE, medication non-adherence costs more than $300 billion every year in the US alone. You read that right. And this staggering amount is comprised of more than just hospitalization and emergency room costs. It also includes things like lost employee productivity and the cost for less optimal patient outcomes. Essentially, think of it as $300 billion the US could be saving each year – but currently is spending – in the midst of an economic downturn.

Here are some of the other noteworthy takeaways:

• Of that $300 billion, more than $100 billion is concentrated in four cardio-metabolic disorders: diabetes, hypertension, high cholesterol and heart disease.

• A key factor in non-adherence is that patients may frequently have an incorrect understanding or an unrealistic expectation from their doctor of what their medications will do for them.

• Recently passed US legislation is attempting to change the way doctors are paid. The new law provides financial incentives for health plans to implement quality measures that hold doctors accountable for impacting patient outcomes.

• Many new solutions, such as telemedicine and the patient-centered medical home, are being piloted and studied. The goal is to learn how technology can impact patient outcomes via medication adherence services and remote medical care.

• To remain relevant to patients, biopharmaceutical companies now recognize that they must incorporate the voice and experience of the patient into their decision-making processes.

Last but not least, our very own Chief Marketing Officer and Head of Business Development David S. Williams III spoke about the work PatientsLikeMe is doing around medication adherence. Specifically, he focused on patient-to-patient interaction as an influential driver of medication adherence and how we can give patients the tools they need to (1) understand how their medication is working for them and (2) hold each other accountable for following their doctors’ instructions.

Do you believe connecting with – and learning from – other patients is critical to adherence?  Share your thoughts in the comments section.

MS PATIENTS PERCEIVE COPAXONE EFFICACY AND TOLERABILITY AS COMPARABLE TO REBIF AND AVONEX
PatientsLikeMe Continues Report Series on Real-World Patient Experiences with Multiple Sclerosis Medications

CAMBRIDGE, MA—November 3, 2011—In the second report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that MS patients perceive Copaxone as having comparable efficacy and tolerability profiles to the interferon therapies Avonex and Rebif.  However, all three medications are perceived as trailing in efficacy and tolerability to Gilenya, Tysabri and Betaseron.  In the report’s analysis of 3,200+ patient conversations about MS DMTs from January-June this year, PatientsLikeMe also finds that Copaxone is perceived as safer than other MS DMTs.

“Patients’ sharing of their Copaxone experience may adversely affect its demand as a first line therapy since patients are becoming more influential in their treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “What has become clear through these reports is that real-world evidence will have a major impact on relative pricing for MS DMTs and play an increasingly important role in access decisions.”

This 46-page report—entitled “Does Copaxone patient experience in the real world justify its value?”—quantitatively and qualitatively analyzes 4,100+ MS patients with experience using Copaxone.  Other report sections include:

• The Patient Voice in Treatment Discussions: Copaxone was discussed in 25% of all patient conversations about MS DMTs.
• Copaxone Efficacy and Side Effects: Of the 1,100+ MS patient evaluations on Copaxone’s efficacy and side effects, 30% reported experiencing “moderate” to “major” efficacy, while 26% reported “moderate” to “severe” side effects.
• Copaxone Price vs. Value: Is this medication appropriately priced compared to other MS DMTs given real-world evidence regarding efficacy and side effects?

The report is available for purchase at http://partners.patientslikeme.com/copaxone-report; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe andhttp://blog.patientslikeme.com]

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Real-world, patient-reported data is becoming more important to everyone in healthcare. One source of that data is patient registries.

According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way.

However, behind every piece of data is a patient.

So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where patients benefit in real-time from what they share. It would need to be where patients could openly share longitudinal demographic and clinical data about their disease while using online tools to improve their outcomes. It couldn’t be just silos of health data focused on one disease at a time; it would need to encompass data on all diseases and inspire patients to share information about those co-morbidities. Finally, it would need to motivate and engage patients to share more, share better.

If this next generation of a “registry” could ensure long-term data sharing, can you imagine how much meaningful insight would be available for patients and industry alike? We could … and that’s what we’ve been building at PatientsLikeMe for the last five years. We’re excited about what that means for our members each day, as well as what it means for the future of medicine.

Our members believe in community—a one-for-all mindset where they can share what they experience and see the same for every other patient like them; a mindset where they expect us to then pass on those experiences to researchers, companies and others who want to learn together and improve healthcare. When we tell members how we make money (by sharing their de-identified data with our trusted partners), many of those patients say, “Great. Share! Share! Share!”

We, as a community, have no doubt that sharing is the essential ingredient in accelerating research, ensuring patient safety and making better treatments.

As we look beyond the chat room and beyond the traditional patient registry, we see a world where patients are openly sharing meaningful, computable and quantifiable data with each other to make their lives better … and, in turn, making all of medicine that much better too.

TWO OUT OF THREE PATIENTS REPORT DISCONTINUING
TYSABRI WITHOUT DOCTORS’ ADVICE

PatientsLikeMe Releases First in Series of Reports on Real-World Patient
Experiences with Top Multiple Sclerosis Drugs

CAMBRIDGE, MA—September 22, 2011—In the first report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world.

“People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better with patients in treatment planning while manufacturers can use them to better design adherence programs to reduce inappropriate discontinuation.”

This 40-page report—titled “Does Tysabri patient experience in the real world justify its value?”—analyzes the experiences of more than 12,000 MS patients who are taking, or have taken, Tysabri or other DMTs.  In the report, PatientsLikeMe evaluates:

• Tysabri Price vs. Value: Is this drug appropriately priced given real-world evidence regarding efficacy and side effects?
• The Patient Voice in Treatment Discussions: Of the 4,083 patient conversations mentioning one or more MS DMTs from January-June this year, Tysabri commanded 27% share of patient voice.  What percentage of Tysabri-related discussions were focused on progressive multifocal leukoencephalopathy (PML) or JCV (John Cunningham virus) antibodies?
• Efficacy and Side Effects: More than half (55%) of the 500 Multiple Sclerosis patients who have taken and evaluated Tysabri experienced “moderate” to “major” efficacy compared to interferon therapies which average 33% moderate to major efficacy.

The report available for purchase at http://partners.patientslikeme.com/tysabri; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

Welcome to the fourth installment of our new PatientsLikeMeOnCall podcast series entitled “It’s Friday – Let’s Journal Club.”

This week’s interview is with PatientsLikeMe’s own Catherine Brownstein, PhD, MPH, who recently won a highly competitive award from the International Congress of Human Genetics (ICHG). One of our in-house Research Scientists, Dr. Brownstein captivated PatientsLikeMe headquarters last Friday with her Journal Club talk about what the ICHG award means as well as how the study of genetics can influence healthcare decisions.

Afterwards, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Brownstein to learn more about how the ICHG award is selected as well as how it spotlights PatientsLikeMe’s potential as a platform for genetic discovery. Listen in below to hear what Dr. Brownstein had to say about how your genetics can affect your condition – from how you metabolize drugs to how your disease will progress.

Now, all patients with an Autism Spectrum Disorder (including Asperger’s Syndrome or PDD-NOS) have the ATEC outcome score available on their profile. The ATEC (or Autism Treatment Evaluation Checklist) is a survey developed by the Autism Research Institute to help parents of children with autism record communication, sociability, sensory awareness and behavior.

The saying goes, “if you’ve met one child with autism, you’ve met one child with autism.” Given the heterogeneous nature of the condition, it’s extremely difficult to find two similar patients with autism. That said, on PatientsLikeMe, patients and caregivers can find and connect with others based on a number of criteria, including age and location, individual symptom scores, treatments taken and now an ATEC score that relates to overall level of function.

Below is a screencast featuring the ATEC and the new patient “nugget” for members with an Autism Spectrum Disorder (as well as changes we made to our QuickStart Guide for caregivers).

By receiving scores for each individual component of the ATEC, you can choose which areas you should explicitly target in therapy. We encourage all of our members managing an Autism Spectrum Disorder to take the ATEC to find out more about your condition and how you can improve your outcomes.

The spotlight is on PatientsLikeMe’s research team this week – and deservedly so.

On Tuesday, Research Director Paul Wicks, PhD, was named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Review. Now, we are extremely proud to announce that PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH, has won a Young Investigator Award from the 12th International Congress of Human Genetics (ICHG).

Held in Montreal, Canada, from October 11-15, 2011, the ICHG is the foremost meeting of the world human genetics community and takes place every five years. The anticipated attendance is 7,000 delegates from over 60 countries around the world. As part of her award, Dr. Brownstein will give a presentation entitled “An internet-based approach to enhance genetic data discovery in ALS” and receive complimentary registration to the five-day conference.

Just how difficult it is to win an ICHG Young Investigator Award? Dr. Brownstein was one of only 64 geneticists selected out of 770 applicants. In addition, her scientific abstract was one of 324 selected for presentation out of 3,932 submitted abstracts. In our book, that puts her in the top 10% of geneticists in the world.

Congratulations to Dr. Brownstein on this prestigious achievement. We look forward to publishing her report from the ICHG on the blog this fall.

“Technology innovation is key to driving growth and progress in the areas of research, medicine, business and economics,” said Jason Pontin, editor-in-chief and publisher of Technology Review. “This year’s group of TR35 recipients is driving the next wave of transformative technology and making an impact on the way we live, work and interact. We look forward to profiling and working with these technology leaders each year, and watching their continued advancement in their respective fields.”

Dr. Wicks has been honored for his work in connecting patients to advance real-world understanding of their diseases. A neuropsychologist by training, Dr. Wicks first became involved in online communities through BUILD-UK, an online forum for people with ALS in his native United Kingdom. He joined PatientsLikeMe in 2006, where he has architected the website’s medical framework that is currently being used by 110,000+ patients with more than 1,000 conditions. The work of Dr. Wicks and the PatientsLikeMe research team has been published in dozens of scientific articles, including the most recent in Nature Biotechnology on accelerating clinical development that reported on the effect of lithium on ALS.

“Paul has made a real difference in thousands of patients’ lives and helped to build a system that is transforming healthcare,” says Jamie Heywood, Co-founder and Chairman of PatientsLikeMe (and MIT alumni). “All of us at PatientsLikeMe are thrilled that he has been honored with both prestigious awards.”

Chosen by a panel of expert judges and the Technology Review editorial staff, who evaluated more than 300 nominations, Dr. Wicks will receive his award at the emtech MIT 2011conference held at the MIT Media Lab in Cambridge, MA from October 18-19, 2011. All of the 2011 TR35 winners will be featured the September/October issue of Technology Review and online at www.technologyreview.com/tr35/.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

About Technology Review, Inc.
Technology Review is an independent media company owned by the Massachusetts Institute of Technology (MIT). More than two million people around the globe read our publications, in five languages and on a variety of digital and print platforms. We publish Technology Review magazine, the world’s oldest technology magazine (established 1899); daily news, analysis, opinion, and video; and Business Impact, which explains how new technologies are transforming companies, disrupting markets, or creating entirely new industries. We also produce live events such as the annual emtech MIT conference.

James Heywood at Pacific Symposium on Biocomputing (PSB) 2012
January 3-7, 2012 on The Big Island of Hawaii

James Heywood at Personalized Medicine World Conference (PMWC) 2012
January 23-24, 2012 in Mountain View, CA

James Heywood at Pharmacovigilance and Risk Management Strategies 2012
January 23-25, 2012 in Arlington, VA

David S. Williams III at CHI’s Summit for Clinical Ops Execs (SCOPE)
February 7-9, 2012 in Miami, FL