Posted by Lori Piscatelli Scanlon | January 29, 2010
In honor of the launch of the new PatientsLikeMe Epilepsy community this week, we have created a video highlighting how patients are coming together to share their experiences with epilepsy and learn from others. It’s now available on our PatientsLikeMe Epilepsy YouTube page.
This short video includes quotes from some of our members about what drove them to join the online community, and walks you through what the community looks like and how members are using it. Know someone with epilepsy? Share this video, our interview with Blueyedgoddez, and/or our announcement with partnering company, UCB.
Welcome to all those joining the epilepsy community!
(Special thanks to our new marketing team member, Aaron Fleishman, for pulling this video together. It’s Aaron’s voice and his band’s music you’ll hear throughout.)
Posted by Lori Piscatelli Scanlon | January 27, 2010
At PatientsLikeMe, we believe in getting to know the person, not just the patient. To celebrate the launch of the new epilepsy community this week, we sat down (virtually) with 3-star member, Blueyedgoddez. Here’s what she has to say about her experiences living with epilepsy:
(Blueyedgoddez) I have blue eyes and I sometimes feel like a goddess, as silly as that may sound. I don’t mean a goddess as in a rich snob or anything. I mean it like an earth child, that sort of thing.
(PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?
(Blueyedgoddez) I had seizures since infancy, however i was officially diagnosed at the age of six. When I was a child, it was difficult in certain ways. Mostly because I knew I could never enjoy certain things that children enjoy - i.e., video games (at that time the resolution of the games were too high, the graphics would induce seizures), rollercoasters, the gravatron (at the carnival), any type of flashing party lights, among other things. As an adult, it’s not that much easier. I can’t drive under no means because where I live you need to be seizure-free for 5 years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child. The people I work with tend to say I use my epilepsy not to do things. How could anyone say I use Epilepsy to my benefit? To me it’s very hurtful. It makes no sense. Also one other thing that seems to bother me as an adult is having children. I was told it’s going to be very difficult.
As you can see by now, it’s a journey having epilepsy. However, in the end, you learn to live, laugh and love - despite all your perils.
(PatientsLikeMe) How does epilepsy impact your every day quality of life?
(Blueyedgoddez) The disease in itself isn’t what really effects my day to day activities, however it’s more the side effects from the medication to treat my epilepsy. Everyday I’m bound with multiple side effects such as, fatigue, headaches, depression, anxiety, aches and pains, nausea, the list could go on. Some days I wake up fine, others not so fine. I have my good days and bad days.
(Blueyedgoddez) I joined because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me, more or less. That’s why I’m here to be helped and to help others. I have a voice and I intend on using it.
(PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!
Posted by Lori Piscatelli Scanlon | January 26, 2010
Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy
CAMBRIDGE, MA and ATLANTA, GA — (Marketwire - January 26, 2010) – Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning from patients’ real-world experiences, the online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.
“As a patient-centered company, we are constantly seeking innovative ways to enhance and adjust our approaches to meet patient needs,” says Iris Loew-Friedrich, Executive Vice-President, Chief Medical Officer, UCB. “We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”
Among the research being conducted, PatientsLikeMe and UCB are analyzing anonymized data shared by participating epilepsy patients, with their consent, via an online clinical survey built into the site to measure patients’ quality of life (including cognitive, social and physical function). Completed by 60 patients testing the site since mid-November, initial survey results show the patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).
Adds Ben Heywood, co-founder and president of PatientsLikeMe, “Patients are telling us that, in addition to seizures, there are many more significant aspects to the disease. It’s this type of real-world data and insight about epilepsy that is going to change how this disease is treated.”
To better understand the impact of medications that treat epilepsy in the real world, PatientsLikeMe and UCB are also taking the lead in implementing a drug safety program within this patient community. The program is designed to capture and report adverse events associated with approved UCB epilepsy therapies to the U.S. Food and Drug Administration (FDA).
Last June, PatientsLikeMe and UCB announced this strategic partnership to build an online community for people living with epilepsy, which debuts today at www.patientslikeme.com/epilepsy/community.
You can see the full news release from PatientsLikeMe and UCB on Marketwire.
Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements.
We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other patients like you. So, we designed the website with the profile charts as the centerpiece around which the rest of the site activity is organized.
The new profile charts, which we’re rolling out today in the ALS community, are designed to help you understand your own profile better and tell your story more effectively. Ultimately, these charts will help you answer the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”
Here are some of the functionality improvements the members of our ALS community will notice:
Charting of treatment side effects. If you have reported side effects for a treatment (by filling out a treatment evaluation), you can now see them plotted on your profile underneath that treatment.
Charting of treatments taken for a symptom. If you have reported that you are taking a treatment for a particular symptom (by filling out the information in the treatment’s “purpose” section), you will see those treatments on your profile plotted underneath the symptom.
Customizable timescale. It is now easy to see your history over various time spans from 1 month all the way up to the entire history, all at the click of a button.
General visualization clean-up. We made some design improvements to make the charts easier to read, such as the visualization of the treatment dosage changes.
What our members will notice more than any of these improvements is that when you interact with the chart (by zooming, opening/closing charts or side-effects, etc.), the interaction is smooth and instantaneous. This is because we completely overhauled the technical platform we are using to display the charts. We think that this new technology will make it quicker and easier for us to give you even more chart innovations in the future.
(For the technically inclined, the old charts were static images with Ajax mouseovers and timeswitchers, and the new charts use Flash technology. Note: All members must have the necessary Flash component installed to display the charts and, in some cases, a Flash installation upgrade may be necessary).
As with all our pilot programs, we will be testing it out to make sure it’s working well for our members. Once everything is working smoothly, we will roll the charts out to our other communities. But even more exciting, we want to continue to add charting innovations, such as the ability to re-order treatments by purpose (treat my condition, treat a symptom, etc.) or overlay the profiles of other patients just like you.
These new charts are the first of many new exciting upgrades to the PatientsLikeMe platform this year. We add these enhancements because we want to stay true to our core values: putting “Patients First” and making changes that “Create Wow!” We hope you agree.
Do you have feedback on the charts or how we’re doing in general? Please let us know!
Posted by Lori Piscatelli Scanlon | December 31, 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year!
Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members. The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy. In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions). Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.
“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”
“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”
Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium). In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform. By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”
Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.
The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.” Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing. Here are some highlights from ‘09:
Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June. Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil. You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.
The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments - it’s the big event for the ALS research community and attracts scientists from across the globe.
PatientsLikeMe Chairman and Co-Founder Jamie Heywood and Research Scientist Timothy Vaughan, PhD presented three posters at the conference with some of the findings we’ve generated this year. The highlight was a poster describing our analysis of the patient-led study of lithium carbonate. Using new techniques that compared patients on lithium to carefully matched control patients, we determined that the drug had no effect on the progression of ALS. The poster was well received with good feedback from experienced experts in the field, and we are currently working on writing up a full analysis and description of our techniques.
Our second poster described a small survey we did about emotional lability, also known as pseudobulbar affect (PBA). We found that although many ALS patients suffer from unusual or uncontrollable outbursts of laughter, crying, or anger, patients aren’t discussing these episodes with their physicians.
Finally, we presented preliminary results from our Familial ALS Genetics Study. About 20 patients have told us about ALS-causing mutations they have, and so far, the data closely resembles other findings reported in the scientific literature. The PatientsLikeMe difference is that patients who know their mutations can find and connect with other patients like them for the very first time.
We’d like to thank our research team for all their hard work this year. And of course, we’d like to thank our patients for sharing their data and making each of these studies possible. Here’s to further understanding and continued breakthroughs in 2010!
A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI. The presentation was on how to “harness new media for patient advocacy” - the same as what I presented at a workshop for non-profits in northern New England in August. This time the audience included non-profits in the southern half of New England. Among those in attendance were representatives from organizations that mean a lot to us, and our patient communities, including regional branches of the American Parkinson’s Disease Association, CFIDS & FM Association, and the Epilepsy Foundation.
One of the highlights for attendees was an impassioned keynote speech by Rep. Patrick Kennedy (pictured above with me and my wife Emma) who advocated the use of the web to support mass organization of patients with serious and chronic illnesses to accelerate research and improve standards of care. We couldn’t agree more. It’s exciting and validating to know influential decision-makers are recognizing the potential of communities like PatientsLikeMe.
Posted by Lori Piscatelli Scanlon | December 1, 2009
Every December 1st, we join hands with the HIV community at large in recognition of World AIDS Day.
The theme of World AIDS Day this year is leadership — a fitting theme for the 2500+ patients who are leading the way through openness in the PatientsLikeMe HIV community. These leaders have chosen to share their health data and their personal stories of living with HIV, not only to manage their own disease, but also to help better the lives of others with HIV.
For 27 years, HIV/AIDS has been a global epidemic. Today, our online community has a few thousand patients whose experiences of living with HIV run the gamut - from the newly diagnosed to those who were infected long ago. Approximately 334 patients (or 12% of our community) indicate they were infected with HIV more than 20 years ago (such as BrightonBear, an early member who shared his story with us in this interview). Similarly, 84 patients indicate on their profiles that they have been living with AIDS for more than 15 years. All of these members have a lot to share - both through data and conversation - about how they continue to face the symptoms, treatments and side effects, and stigma of living HIV-positive. There are also members who are new to HIV, with 162 patients in our HIV Community indicating they were diagnosed less than 2 years ago. Our patients, both newly diagnosed and veterans in the HIV community, are true leaders - openly sharing their real-world health data and personal stories about living with HIV. Here are some interesting tidbits the community is sharing:
How are patients like you evaluating the most popular treatments used for HIV? See what they say in our treatment reports about Atripla, Ritonavir, and Truvada.
Ever heard of Coconut Macaroon Cookies used to “treat” HIV? A handful of PatientsLikeMe members cite it as a great way for patients to curb their diarrhea, a common side effect of their cocktails.
That numbness in your hands and feet could be peripheral neuropathy, a common symptom in HIV. Patients are discussing treatments ranging from prescription drugs to lifestyle modifications to lessen the effects.
Some of the most discussed topics patients in our forum include specific treatments (i.e., Atripla and Truvada) and side effects, common symptoms (like fatigue) and other quality of life issues like depression, relationships, dealing with a new diagnosis, and coping.
For the past two years, PatientsLikeMe has worked in cooperation with AIDS.gov, a government media program committed to improving the lives of patients with HIV. Check out their “Facing AIDS” photo campaign in honor of World AIDS Day.
Thank you to all of our members who continue to share and learn. It’s you who are leading the way.
Posted by David S. Williams III | November 24, 2009
A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in the Health 2.0 space because companies must balance patient needs with commercial reality to keep the doors open.
Central to that discussion for PatientsLikeMe are our core values. As I’ve discussed many times before, it is our imperative to keep patients first in all of our endeavors, including building the revenue base for the company, because we must honor the trust patients give us in sharing their deep health information.
There was a mini-flurry of Twitter activity during the talk as well. Check out some of the thoughts from leaders in the space to the right.
What do you think? Video from Bil:Pil will be available in the coming weeks. Kudos to Jonathan Sheffi and team for organizing a great unconference!
Posted by Lori Piscatelli Scanlon | November 18, 2009
Every so often, we sit down to try and make our business objectives clearer to our patient communities. Why? Well, we can’t have a business without you and our communities can’t exist to help patients without a business.
This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives. One of our company’s core values is transparency, which means we never want to surprise you. Our site wouldn’t be what it is today if we didn’t honor the trust you put in us. Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.
So, what has changed about our Privacy Policy? Well, the short answer is not much - but if you haven’t read it in a while, it will read differently (and hopefully much clearer). As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you. In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means. We give specific examples of real world cases of where and when your data is used and/or sold.
For example, over the last year we have expanded our efforts into understanding drug safety in the real world. This started with the Treatment Evaluations - letting you tell us (and our customers) what is good and what is bad about the treatments you are taking. Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe. Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community. All of these initiatives are building to a better understanding of how treatments work in the real world - one of our goals here at PatientsLikeMe.
As we’ve said through our site from the start - you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.” This is common sense on any website, but for new members we wanted to make it clearer. The bottom line - the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.
If you haven’t see our Read This! section, please do. It’ll help give you a sense of what we believe the risks and benefits are to sharing information. Openness is at the core of who we are as a company (see our Openness Philosophy). Your openness is improving patients’ lives, accelerating research and helping improve medical care. Thank you for that. If you have any questions or comments, you know where to find us!
Posted by Lori Piscatelli Scanlon | November 9, 2009
One thing that’s great about working at PatientsLikeMe is that our members are really invested in making our product better. Every day, we receive lots of great recommendations about how to improve the site. Today, we’re unveiling newly redesigned treatment reports that incorporate feedback we’ve received in all our communities. Want to know what medications patients like you are using to treat their condition and compare your experiences with others? That’s what you can do with a treatment report. In redesigning these reports, we wanted to make them more useful, more visible and easier to navigate. Now you can:
Understand the experience of taking a treatment, including what the side-effects are and how people manage those side-effects
Learn how to cope with taking a drug (with tips and advice from other members and links to relevant forum threads)
Find and contact other patients like you who use a certain treatment (such as people who report the same side effects or people who take it for the same reason)
See how your experiences compare to those of other patients like you
If you’d like a tour of these new reports, check out the screencast below by our web developer Adam Darowski. We’ll continue to update you through the forum, our newsletters and the blog on what’s new and improved on the site. Your feedback helps us to continue to fulfill our promise of delivering a website that helps you and makes you say “wow.” Please, keep it coming…
Posted by Lori Piscatelli Scanlon | November 5, 2009
Earlier this Fall at Medicine 2.0, PatientsLikeMe was honored to receive the inaugural Journal of Medical Internet Research (JMIR) Award for our paper on what we can learn about drugs post market from patients reporting treatment experiences on PatientsLikeMe.
Once a drug is on the market, it can be difficult to evaluate how it’s working in the real world for different kinds of people using it for different purposes. In this paper, our research team examined how we can learn from collecting the experiences from individual members scattered around the world into a single database. The study focused on Amitriptyline, a medication used widely and for a variety of purposes, and reports on why patients take it, the efficacy of the drug, its side-effects and associated burden.
To see patients’ real world experiences with a specific treatment, like Amitriptyline, you can browse the thousands of treatment reports shared on PatientsLikeMe. You can also view a summary of our Medicine 2.0 presentation here or below to learn more about this study. The full paper will be published in 2010, so stay tuned!
Posted by Lori Piscatelli Scanlon | October 30, 2009
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter.
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PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME
Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus
Cambridge, MA–October 30, 2009–PatientsLikeMe (www.patientslikeme.com), the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.
“With 1 million patients diagnosed with CFS, and potentially 10 million Americans who could be infected with the XMRV virus, there is an unique opportunity to use the power of our open medical network to understand this illness and accelerate the validation and development of new biomarkers and treatments,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe.
There are currently more than 7,000 patients, many who have CFS, in the PatientsLikeMe fibromyalgia community sharing meaningful data for researchers to analyze about the condition. As part of this expansion, the PatientsLikeMe platform will allow patients who test positive for XMRV to indicate that on their profiles, much how ALS and Parkinson’s patients can now add their genetic information.
Adds David S. Williams III, head of business development at PatientsLikeMe, “This discovery may spur research into the efficacy of anti-retrovirals for patients with CFS, which could have a dramatic impact on the $10 billion market for these medications.”
Heywood will announce the new CFS community on stage at the health technology conference TEDMED in San Diego, CA today. CFS marks the 17th condition available to patients on PatientsLikeMe, which now boasts more than 45,000 patients sharing health data on treatments, symptoms and outcomes. The company’s next community for people with epilepsy is scheduled to launch in early 2010. More about PatientsLikeMe partnerships can be found on its partner site: http://partners.patientslikeme.com.
Posted by Lori Piscatelli Scanlon | September 24, 2009
Check out the October issue of WIRED magazine! PatientsLikeMe makes “The Smart List: 12 Shocking Ideas That Will Change the World.” In an interview with Brendan Koerner (”Forget Medical Privacy“), Co-founder Jamie Heywood talks about how “the lack of openness [in medicine] is making us sicker” and how sharing individual health data can benefit you. What do you think?
Earlier this month, Jamie also gave a rapid fire presentation on the future of medicine at the 2009 Gov 2.0 Summit. He addresses how we can better answer this question for patients: “Given my status, what is the best outcome I can achieve and how do I get there?” Here’s how (with openness leading the way):
PatientsLikeMe is the leading online community for people with life-changing conditions. Patients embrace the open sharing of personal health data because they believe that information can change the course of their disease.
With a focus on patients and research, our blog reflects knowledge resulting from the shared real-world experiences of our community. Welcome to the genesis of patient-led research.
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our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called 
AGM in Athens
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out 
