Epilepsy

Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

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 …

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Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)

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) …

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Sharing and Learning with PatientsLikeMe

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. To review all of our newsletters, you can visit our archives page here. * * * (Amy) How has PatientsLikeMe helped you learn and share this year? (Tommy Maker – ALS Community) 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 …

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Share and Compare: Be a PRO! Understand Your Experiences in Context

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 …

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Epilepsy Awareness Month: The Alternative Way

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 …

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Epilepsy Awareness Month: What do you know about Epilepsy?

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 …

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Drug Safety: It’s About More Than Just Compliance

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 …

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Know Thy Self – Measuring Your Quality of Life

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 …

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Manage your epilepsy like a PRO

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 …

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Video: Introducing the New Epilepsy Community

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.)

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