Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog.
What are the benefits – both expected and unexpected – of a four-legged assistant? We asked some of our members to talk about their service dogs’ best qualities.
The Uncanny Seizure Predictor
“[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” - Mandysmother (Epilepsy patient)
The Sensitive Tear Licker
“He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.” - Some1Special (Mental Health and Behavior patient)
The Good-Humored Mind Reader
“[My service dog Mali] was the best decision I ever made. With her I now have some of my independence again, and for a woman who used to climb mountains and water ski, going to the store again after years never going anywhere alone, this means the world to me. The fact that Mali has a sense of humor and seems to read my mind is only another blessing to go along with my newfound freedom.” - Anahit (Fibromyalgia patient)
The Anti-Tripping Companion
“My neurologist thinks the service dog is preventing my gait from freezing! (When he heels, he constantly moves his head near my knee to check for a command.) I haven’t ended up on the ground or floor since I got him. He is great company! He is always willing to join me on my ’5 miles/day,’ and since I got him, no one has mistaken my Parkinson’s for being intoxicated!” - FriendlyTraveler (Parkinson’s disease patient)
Do you have an outstanding service dog too? Share your experiences in the comments section and don’t forget to add “service dog” to your list of lifestyle modifications.
Posted by Lori Piscatelli Scanlon | April 12, 2011
In today’s news…
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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, the leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.
The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9th-16th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.
Today, we continue the series by highlighting examples of the choices patients like you have made in the past twelve months (pulled from 2010 newsletter interviews).
Patient Choices About…
Being Open
“I decided to make my profile public with the hope that something I have experienced, have done, or could say may help someone else along the way. Because my family seems to still live with the stigma of HIV/AIDS and prefer I don’t allow others close to our family to know of my status, I guess maybe in a way it is my subconscious defiance to my family’s fears.” – memyselfandHIV
Staying Active
“I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.” – Ramilla
Making Lifestyle Changes
“I can’t drive under no means because where I live you need to be seizure-free for five 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.” – Blueeyedgoddezz
Tackling Challenges
“My biggest challenge of late has been to deal with my newly diagnosed diabetes. I am fortunate, because it was discovered in the early stages, so I’m doing quite well controlling my glucose levels. I’m learning to accept that there will be some high readings, rather than stressing over them, since my doctor is very pleased with my progress.” – Dirty Butter
Retiring
An interview with AlwaysLearning on her choice to retire from teaching.
2010 was a strong year for business development at PatientsLikeMe. Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two. Here are a few of our successes and challenges over the year.
Successes
1. New Partnerships, New Communities
In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners. UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community. Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.
As with all of our partnerships, we made sure the focus is on the patient experience. For example, what are your perceptions about the medications you take? How do you see these treatments impacting your quality of life? Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.
2. Enhanced Services for Partners
When we create products and services for our corporate partners, it’s with a single objective: to amplify the patient voice. As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly. In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.
PatientsLikeMeListenTM and PatientsLikeMeLandscapeTM
These complementary services help measure both the frequency and sentiment of treatment discussions in our community forums. In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using PatientsLikeMeListenTM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscapeTM ). Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.
Challenges
As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges. 2010 was no different. Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.
1. Guidance on Industry Interaction with Social Media
One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media. Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.
PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeadersTM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate. Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need – without fear of non-compliance.
2. Being Open About the Data Scraping Incident
In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service. Not only is that a violation of our User Agreement (“You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.
We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred. We sent a message informing all patient members, and about 200 patient members left the site as a result. In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients. We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.
Since our PatientsLikeMeListenTM product measures sentiment of discussions in our forums, we reminded our members about this similar service. We will continue to inform and educate our members about how we conduct business so there are no surprises.
Summary
In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests. In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.
Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments. Happy 2011!
The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011. Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010.
The R&D team published and presented some unprecedented insights based on what you shared with us this year. In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you.
Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site. Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?”
Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities. Today, we start with the following (listed from newest to oldest community):
Organ Transplants
Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) Renal Week in Denver. We compared the profile of our Transplants Community to published data from the UNOS/OPTN databases and found that about half of our patients knew about the exact degree of tissue matching they had with their donor. We found the fewest mismatches in organs that had come from deceased, rather than living donors. We also found that within the living donors the closest matches came from siblings, followed by parents, children, and then any other relative.
Epilepsy
In December, the team attended the annual American Epilepsy Society (AES) conference and presented a poster comparing our data to the Pharmetrics insurance claims database. We found that our Epilepsy Community is a little more likely to be female, more likely to be in their 20s-40s, and that they are more likely to be taking multiple anti-epileptic drugs than the broader epilepsy population. Exploring the biases in our data set and being transparent about them is one of our core values as a science team.
PatientsLikeMe is running an ongoing patient-reported outcomes (PRO) study with UCB to measure the physical, social and mental well-being of people with epilepsy over time. By the end of 2010, members of our Epilepsy Community had completed more than 1,300 PRO surveys. Thanks to all of you who contributed.
Fibromyalgia
The R&D team recently blogged about a report comparing our Fibromyalgia Community to the wider fibromyalgia population and revealed we are now able to declare with confidence that our community very closely matches the fibromyalgia community at large.
In 2010, we published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR). The study, conducted across several of our communities, established a link between sharing health data and benefits experienced on our site. The fibromyalgia-specific findings were that 21% of fibromyalgia members of our site strongly agreed or agreed that they had changed physicians as a result of using PatientsLikeMe, higher than the rate in MS (15%), mood (10%), Parkinson’s (9%), HIV (8%), or ALS (6%).
In response to popular demand for more research in fibromyalgia, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.
Mood
Looking again at the JMIR study specifically within the Mood Community, we found 26% of users agreed or strongly agreed that using the site had reduced thoughts about self harm; 23% agreed they had decided to start therapy or counseling after interacting with others on the site; and 22% agreed they needed less inpatient care as a result of using PatientsLikeMe. Here’s a video where I present some of these results, and give a walk-through of the Mood Community, at the UMASS Medical School’s Psychiatry Grand Rounds this year.
We also recently introduced a new tool in all of our communities called “InstantMe” to help you put your experiences in context. Based on the feedback we received from members of our mood community about the pilot tool (called “InstantMood”), it is now available for everybody.
In response to popular demand for more research in mood, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.
More highlights, including a video, coming tomorrow.
Posted by Lori Piscatelli Scanlon | December 22, 2010
In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010. Below are highlighted answers from each interviewee across all nine community newsletters. Thank you for your contributions.
We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities. Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.
PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree. I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own. I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.
I really like it here in that I can keep track of all my meds with their side effects, etc. Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.
It has given me the experience of reading about others who are in situations similar to mine. It has shown me that I am not alone. I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.
Also, I became acquainted with someone online through PatientsLikeMe. We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time. Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.
It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary. (My general practitioner and Consultant just brush the list aside and shrug their shoulders).
I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.” I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.
Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.
I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.
(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)
PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.
I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).
PatientsLikeMe has helped me so incredibly much! I’ve made so many friends that I thank God for every day. It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.
I just really hope that people can say that about me. It took me awhile, but no one is alone out there. Everyone is going through their own personal struggles. I just want everyone to know I am all ears!
This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context. With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you.
Patient Reported Outcomes (PRO) questionnaires are a great tool to illuminate the physical, mental, and social dimensions of your overall health. In fact, PROs are increasingly used in clinical trials, and in December 2009 the FDA approved the use of PROs to support product claims. Best of all, PROs are free of clinical interpretation, which empowers you, the patient, to have your voice heard in the real world.
PatientsLikeMe is an unparalleled platform for electronic PROs, which have a few advantages over traditional pen-and-paper ones, such as:
Patients are more likely to share and share truthfully using electronic interfaces;
Researchers have real-time access to the data;
Electronic PROs enable alerts for specific concerns (such as adverse side effects), ensuring better safety for all patients (1).
Early on in our partnership, our colleagues at the biopharmaceutical company UCB proposed a longitudinal PRO survey: members of our Epilepsy Community would have access to surveys that reveal the effect of their condition on everyday life over distinct periods. That’s right — you could see your progress over time! Together with UCB, we decided to take the concept of an electronic PRO one step further: not only would you be able better understand your own experience with epilepsy, but you would also be able to put it in context. When you complete a PRO survey, you’ll see that you can compare your results to the larger Epilepsy Community!
Figure 1
Figure 2
Such commitment to patient health reveals two interesting things about UCB: First, patients really do come first; and secondly, UCB is committed to understanding how their products work in the real world, and not just in clinical trials. It is not easy to take a leadership position in an innovative arena such as this, and we are proud to partner with such a company.
As of today, members of our Epilepsy Community have completed more than 1,300 PRO surveys. By the end of 2010, many of you will have contributed to the largest patient-led study ever in epilepsy.
Are you in on what our communities already know? Share…and then compare. If you understand your condition in the broader context, you’ll be a PRO too.
1. Dupont et al. “Use of Tablet Personal Computers for Sensitive Patient-Reported Information.” Journal of Supportive Oncology. Volume 7, Number 3. May/June 2009.
Posted by Lori Piscatelli Scanlon | November 16, 2010
It’s Epilepsy Awareness Month, so let’s continue with our series of blogs about our Epilepsy Community members’ experiences with this disease. Below is an interview with member “akamine2525.” Earlier this year, she gave the following interview in our monthly newsletter. Want to know what keeps akamine2525 motivated, who she admires and how epilepsy has affected her work life? Read and share on.
* * *
(Amy) What keeps you motivated?
(akamine2525) Throughout the years I have been on many different medications for seizures. I’ve had pretty much all different type of seizures from grand mal to absence seizures. I have had psychogenic seizures due to previous abuse and bipolar disorder due to previous abuse. My doctors at Straub Hospital in Honolulu are the ones I trust the most with my recovery. My current physician, Dr. James Pearce, just recently started me on Keppra, which by far has helped me the most with all of my seizures and my bipolar disorder.
(Amy) Who do you admire and why?
(akamine2525)I admire all of the people who try to learn how to control their seizures with alternative ways such as diet, exercise, supplements, herbs, and religious activities if they are religious also helps a lot. It says a lot to me if a person tries to find control of their seizures because it says I really want to make life as easy as possible, not letting limitations get in my way.
(Amy) How has your condition affected your work life?
(akamine2525)For a while, seizures and bipolar disorder had a lot to do with work. Because my seizures were so out of control several years ago, it limited the amount that I worked, but when I was able to work, I did more than I could beyond my limits. Today, I don’t work, and I care for my dog, but if I had the opportunity to work again I would consider it.
(Amy) What’s your favorite part of PatientsLikeMe?
(akamine2525)My favorite part of PatientsLikeMe is I get to hear from other people who have the same conditions as me and also try to help them to get better with alternative ways besides prescription medication. My goal is to help others to limit their prescription medications if possible and to deal with seizures in other ways.
Posted by Lori Piscatelli Scanlon | November 11, 2010
Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients. In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community.
Did you know…
You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
Others in the community have indicated a causative comorbidity for their condition, such as:
Head injury (242 patients to date)
Brain tumor (70 patients to date)
Stroke (38 patients to date)
Encephalitis (34 patients to date)
543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”)
As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).
How are our members treating their condition?
Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.
The 5 most common symptoms reported include: Memory problems, problems concentrating, fatigue, excessive daytime sleepiness (somnolence) and depressed mood.
What are they talking about?
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Keppra, Lamictal, Vimpat and Topamax), as well as seizures, seizure triggers, driving, and doctors.
Members share a lot about their experiences switching medications and managing side effects.
Members motivate each other to make the most out of their doctor visits by encouraging you to ask certain questions and be proactive in seeking care.
What else do you know? Learn and share with PatientsLikeMe today.
Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences.
When I recently spoke before the FDA, we highlighted how our pharmaceutical partners are taking a leadership role by navigating through these issues. In so doing, our partners are learning about real world experiences of patients and how to meet their adverse event reporting responsibilities in the PatientsLikeMe Epilepsy, Organ Transplant and Multiple Sclerosis communities.
“…as the FDA contemplates the Internet and social media as an emerging source of drug safety data, it is essential to consider what characteristics distinguish a social media site as being capable of contributing to drug safety in a meaningful, computable and quantifiable manner.”
Meaningful, computable and quantifiable are three words that underscore all that we do at PatientsLikeMe. This includes the creation of our patient safety program. Early on, we approached patient safety proactively with a pilot program in our Multiple Sclerosis Community. Launched in 2009, this program allows patients to voluntarily report adverse events that funnel to the FDA’s MedWatch system. Our system automatically pulls relevant data from the patient’s existing profile into an FDA 3500 form, dramatically reducing form completion time.
Going beyond that in areas where we work deeply with our pharma clients, we developed an integrated and comprehensive drug safety reporting platform that monitors patient data and free-text for potential adverse events. This data is then medically curated into standard MedDRA terminology and submitted electronically to meet regulatory timelines and reporting criteria. Of note, PatientsLikeMe is the only online health data platform in social media that has passed multiple drug safety compliance audits.
The reality today is that patients are sharing their real-life experiences with post-marketed drugs online. By using structured data collection tools within the PatientsLikeMe platform overseen by a drug safety professional, industry partners can improve patient safety.
This is about more than just compliance, though. We believe it’s about leadership – patients and pharma working together in new ways. Listening – to understand the positive and negative patient experience – is the right step in developing a trusted relationship. And this trust-based relationship is the only foundation upon which to build your social media strategy.
Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community. By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally. Today, this same QoL measure is used by thousands of patients across the HIV community and other communities, such as Epilepsy and Organ Transplants.
PatientsLikeMe Research Scientist, Michael Massagli, recently spoke with us in a PatientsLikeMeOnCallTM podcast interview about the goal, outcomes and benefits to measuring your quality of life. Listen here:
“[In the HIV community], we’ve taken a look at the relationship between QoL and CD4 level and find the average score of patients with CD4 below 200 is significantly lower for physical, mental and social well-being. People with the most comprised immune systems have worse quality of life, across all 3 domains, than other patients… “
To date, several of our members have at least three QoL scores on their profile. Mike says, “Multiple uses of the QoL instrument by the same person over time helps researchers determine how small a change in QoL scores is meaningful to patients or important enough to evaluate how a treatment is working.”
Adds R&D Director, Paul Wicks, “We all know that measuring disease is important; tumor size in cancer, blood tests in cardiovascular disease, or frequency of seizures in epilepsy, for instance. Increasingly though, clinicians and researchers are coming to realize that these measures don’t give the whole story; they’re missing the real impact of a condition on patient’s ability to function. You might have high blood pressure but it doesn’t affect your life at all, or you might have a relatively low amount of pain (as measured by, say a 0-10 pain scale), but it could be interfering with your work life a great deal.”
So have you completed a quality of life survey recently? If so, you’ll also notice a cool new feature on the site that helps you better understand how your quality of life compares to others. When you take 5 minutes to answer the 24 questions in the survey, here’s what you’ll see:
As Mike says in his podcast, this is just the beginning. Stay tuned for more about quality of life measurements.
Ever wonder how epilepsy affects the patient — the whole patient? A patient-reported outcome (PRO) is a questionnaire commonly used in the clinical world to asses a patient’s quality of life (QOL) for research studies. Most of the time patients never get to see their test results, much less see them plotted over time. That’s a shame because many of the best PROs were designed with the help of patients talking about their condition in their own voice.
Patients in our epilepsy community can now access a series of PROs to help understand the effect of their disease on everyday life and have a voice in real-world, real-time research. The best part is that once they’ve completed the questionnaires (which should take about 20 minutes) they get to see summary findings of how they compare to other members in the community, plus a summary of their overall physical, mental, and social quality of life is displayed on their profile and their patient icon.
This is an ambitious project; we’re looking to get data from thousands of patients with epilepsy at 3 distinct time points. Through this shared goal for the community, patients are pulling together and encouraging one another to have a voice in research. After all, the more data is in the system, the more insight every individual can gain from taking part!
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 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.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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Epilepsy, Fibromyalgia, Mood Conditions, Openness, Parkinson's Disease, Share and Compare 
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In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis. A few weeks ago, 
Launched earlier this year, the 
Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the 
