16 posts tagged “quality of life”

PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study

Posted March 8th, 2016 by

 

CAMBRIDGE, Mass. & TAMPA, Fla., March 8, 2016—Patient network PatientsLikeMe® and informatics solutions provider M2Gen® are collaborating to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

The partnership aims to advance cancer research by combining real-world, patient-reported outcomes shared by members of PatientsLikeMe with the molecular and clinical data shared by patients enrolled in the Total Cancer Care® program at Moffitt Cancer Center and The Ohio State University Comprehensive Cancer Center –

Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James). The combined dataset will give researchers a broader, longitudinal view of the many factors that affect patient outcomes.

The collaboration’s initial study is expected to kick off within the next several months and to focus on lung cancer. Researchers will analyze and explore the typically distinct forms of data to generate new insights into the patient experience and value of treatment plans for those undergoing care. The study is funded by PatientsLikeMe partners AstraZeneca and Genentech, a member of the Roche Group.

“As we continue to expand our real-world measurement system, we want to ensure we’re giving patients access to all of the information needed to help guide their care decisions,“ said PatientsLikeMe CEO Martin Coulter. “By integrating data from multiple sources, we’ll be able to get, and give, a more comprehensive picture of disease and patients’ experience managing it.”

Moffitt Cancer Center and OSUCCC – James are founding members in the Oncology Research Information Exchange Network (ORIEN), a unique research partnership among the country’s top cancer centers. M2Gen guides ORIEN’s operations and strategy. Dr. William (Bill) S. Dalton, Founder and CEO of M2Gen, said the collaboration will help guide how cancer care evolves.

“This partnership brings together everything we need to better understand the patient, identify unmet needs, and use that insight to develop better technology, treatments and care protocols,” said Dalton. “We ultimately hope it provides the tools and information patients and their doctors will use to make treatment decisions that are tuned to patients’ life goals and treatment preferences.”

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About M2Gen
M2Gen is Moffitt Cancer Center’s wholly owned, for-profit, informatics solution subsidiary advancing personalized medicine by using high quality tissue, clinical data and molecular technology to accelerate the discovery and delivery of personalized medicine. Using a rapid learning approach, the goal of M2Gen is to accelerate the science of precision medicine by creating evidence and knowledge-based solutions that identify a patient’s susceptibility to disease, predict how the patient will respond to a particular drug, and match patients to the best therapies for an optimal treatment outcome. M2Gen, along with Moffitt and partnering community hospitals, has created a large, cancer-focused biorepository linked to clinical and molecular data. For more information visit www.m2gen.com

About the Oncology Research Information Exchange Network (ORIEN)
The Oncology Research Information Exchange Network (ORIEN) is a unique research partnership among North America’s top cancer centers that recognize collaboration and access to data are the keys to cancer discovery. Through ORIEN, founders Moffitt Cancer Center in Tampa and The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute in Columbus leverage multiple data sources and match patients to targeted treatments. More information is at http://www.oriencancer.org/.

About the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute
The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute strives to create a cancer-free world by integrating scientific research with excellence in education and patient-centered care, a strategy that leads to better methods of prevention, detection and treatment. Ohio State is one of only 45 National Cancer Institute-designated Comprehensive Cancer Centers and one of only four centers funded by the NCI to conduct both phase I and phase II clinical trials on novel anticancer drugs. As the cancer program’s 306-bed adult patient-care component, The James is one of the top cancer hospitals in the nation as ranked by U.S. News & World Report and has achieved Magnet designation, the highest honor an organization can receive for quality patient care and professional nursing practice. At 21 floors with more than 1.1 million square feet, The James is a transformational facility that fosters collaboration and integration of cancer research and clinical cancer care. For more information, visit www.cancer.osu.edu.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Psoriasis in Fall: What We’ve Learned

Posted December 7th, 2012 by

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

Check Out the Fall Psoriasis Survey Results

How do people with psoriasis cope with the drier autumn air? Do they drink more water, use a humidifier in their house or intensively moisturize with a favorite lotion? This was just one thing we set out to discover in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

The average age of those who participated was 43, with 74% female and 26% male. What did they have to say? In response to the best way of dealing with the drier air, an overwhelming 71% said, “moisturize, moisturize, moisturize.” 27% agreed that drinking more water was the most effective way to keep your whole body hydrated, and only 2% said that humidifiers worked for them.

How Our Survey Respondents Cope With Drier Air

We also asked how psoriasis affects quality of life, including social activities, sports, personal relationships and more. These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis. Don’t miss this in-depth look at how our psoriasis patients rated their “skinpact” this fall along with what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score). Also, discover how many of our respondents get annual flu shots.

The Cover of Our Latest Patient Voice Report on "Uncovering Psoriasis"

Interested in other seasonal psoriasis insight?  Find tips about living with psoriasis during the summertime in our previous report.

Want to connect and learn from psoriasis patients like you?

screen-shot-2012-10-01-at-102602-am


New Quality of Life Index and More for Psoriasis

Posted February 6th, 2012 by

Are you one of the roughly 700 patients with psoriasis at PatientsLikeMe?  We’ve got some exciting new features just for you.

A Sample Graph Produced by Taking the Dermatology Life Quality Index (DLQI)

At the end of 2011, we unveiled the Dermatology Life Quality Index (DLQI), a new 12-question survey that helps you measure how psoriasis affects your day-to-day life.   Answer the questions regularly to produce a graph (see above) showing how things are changing over time.  That way, you’ll be able to see how various treatments and interventions are impacting your quality of life.

Instructions on How to Measure Body Surface Area (BSA)

Another new feature is the Body Surface Area (BSA) lab test, which measures the percentage of your skin affected by psoriasis.  Not sure how to approximate that?  Your palm (including fingers) represents about 1% of your body surface area, so use that as a proxy.  How many palms would equal the area of your body affected by psoriasis?  If it’s 15 palms, for example, that would be equal to 15% of your body surface area.

The Profile Icon or "Nugget" for Psoriasis Patients

Finally, if you have listed psoriasis as your primary condition (and more than 350 of you have), you may have noticed that you have a brand new patient icon or “nugget.”  It displays your latest DLQI and BSA scores as well as your age, gender and latest InstantMe status (e.g. “Very good” in the example shown to the left).

So, what do you think of these new features?  Have you tried them out?  We’d love to hear your thoughts and feedback.


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

Posted January 5th, 2011 by

The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community.  In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times.  All of this is because of what you share with us.

Yesterday, we highlighted some of the research work we’ve done in 2010 across our four newest communities.  Today, we’ll highlight our older communities.  Below is also a highlights reel of some of this work.

HIV

  • Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found that the average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200.

Parkinson’s Disease

  • The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering the questions on this scale, members often asked us: “Should I respond when my drugs are working and I’m at my best (‘On’) or when my drugs aren’t working and I’m at my worst (‘Off’)?” Back in October, we released a brand new feature in the PD community that allows you to rate your symptoms as either “On,” “Off”, or in both conditions so now you can see the effect of your medications for yourself.

Multiple Sclerosis

  • We hear a lot from you about the difficulty of adhering to medication. Early last year, our research team developed a new rating scale for patients with MS to assess the difficulties of sticking to their medication. We presented findings at the Consortium of Multiple Sclerosis Centers (CMSC), the main North American conference for MS specialist physicians, nurses, and researchers. The team is currently working on publishing these findings.

ALS

  • Co-founder Jamie Heywood discussed our research into lithium in ALS at the TEDMED conference late in 2009. In early 2010, TEDMED released the video of his presentation where he shares our vision of the future of medicine. The team is currently working on publishing the lithium findings.
  • PatientsLikeMe, in collaboration with researchers at Oxford University, discovered that when ALS patients get symptoms in their arms first, they’re most likely to get it in their dominant hand. This research was presented at the ALS MND Symposium and cited on this MND Research blog.
  • We also collaborated with the Northeast ALS Consortium (NEALS) to examine the decision-making process that patients with ALS go through when considering whether or not to take part in research studies; this was published in the peer-reviewed journal Amyotrophic Lateral Sclerosis.

Here’s a short video highlighting much of the research you’ve helped us do in 2010.

Finally, I want to recognize how our team has expanded this year to better focus on what matters to you most.  Some new additions include:

  • Brant Chee, Ph.D. – a specialist in natural language processing and detecting drug safety data in patient reported text
  • Kate Slawsky, MPH – an outcomes researcher helping to develop custom surveys for our partners and our platform
  • Shivani Bhargava – a research assistant supporting the team in ensuring our platform holds high-quality data about our patients

Thank you all for having a voice in research. There’s so much being learned from what you are sharing every day, and we are excited about what 2011 will bring.

PatientsLikeMe member pwicks


One for All: A PatientsLikeMe Year in Review (Part 1)

Posted January 3rd, 2011 by

Thanks everyone for a great 2010.  As we kick off the New Year, PatientsLikeMe would like to take a quick look back at the road we’ve traveled together this year.  We think of all these improvements as laying the groundwork for even more exciting changes to come in 2011.

PatientsLikeMe Flash charts

At the start of 2010, we set out to tackle two very important goals that could help you, our members, get the best possible experience out of PatientsLikeMe:  1) unify the way we collect medical information and 2) give more information back to you so you can see how you fit in and compare your experiences with others.  Kate Brigham recently talked about some of the improvements we’ve made on the second goal in her Share and Compare post, but I’d like to share a bit more about the first goal.

Our communities have a lot in common despite their different conditions and health concerns.  As Tommy Maker said in a recent newsletter interview, “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.”

“We are all in this together” is the sentiment we hear from you time and time again.  In that spirit, we made a lot of changes to unify your experiences across all our communities.  Many of these improvements started in one community where some of you tried functionality and gave us good feedback so we could improve things and share them with all patients.  With the rollout of every product development below, you can now better share and compare your experiences.

Here are some examples of ways our communities have helped each other learn and grow in 2010:

  • Flash charts: We piloted these in the ALS community last January and received a lot of great feedback.  Since that successful pilot, we converted the profile charts in all our communities to these more flexible and easier to understand charts.  This change also enabled future enhancements, like re-organizing your profile and better Doctor Visit Sheets.
  • Condition History: While many of the questions you answer on PatientsLikeMe are very specific to your medical condition, there are a lot of questions that apply to any and all patients.  When did your symptoms start?  Do you have a diagnosis?  Are you taking any treatments?  Now members across communities answer many of the same questions in the condition history so everyone can share and see how their answers compare with the rest of the community.
  • InstantMe: This idea of asking you a quick question about how you are doing started out as InstantMood, and was available only to members of the mood community.  They gave us great feedback and helped us to improve it (especially adding a “neutral” answer choice) before we rolled it out to patients in all our communities in November.  It’s now called InstantMe.
  • Quality Of Life: The quality of life survey we just made available to all members at the end of December was piloted in the HIV and Organ Transplants communities.  By having a way to measure your social, mental and physical well-being, now you can gain a better understanding of how your condition affects you – the whole you.

Thank you to all the members of our community who continue to share and learn along with us.  Watch this year in review video to see how you all have contributed to making the patient experience on PatientsLikeMe one of a kind.

PatientsLikeMe member moakes


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

Posted December 6th, 2010 by

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

qol1

Figure 2

proresults-forblog

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.

screen-shot-2010-12-03-at-95803-amAs 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.

PatientsLikeMe member AMGraham


World AIDS Day 2010: Did you know…

Posted December 1st, 2010 by

Did you know today is World AIDS Day? Thanks to the many different organizations (including those like AIDS.gov) recognizing the day and raising awareness about HIV and AIDS.

Now a few years old, the PatientsLikeMe HIV community currently has more than 2,800 people with HIV sharing their health information to help others learn from their experiences. In honor of today, here’s a snapshot of what patients like you are sharing and learning about in this community.

screen-shot-2010-12-01-at-41455-pmDID YOU ALSO KNOW…

  • You can all find patients like you by searching by CD4 count, viral load, years since infection and more.
  • In a PatientsLikeMe research study published in the Journal of Medical Internet Research, we revealed:
    • 63% of HIV community members on PatientsLikeMe agreed they had better understanding of the consequences of taking a “drug holiday” after using our site
    • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
    • 29% agreed PatientsLikeMe had helped them decide to start taking antiretroviral drugs
  • PatientsLikeMe research scientist Mike Massagli spoke earlier this year in a PatientsLikeMeOnCallTM podcast interview about the benefits of measuring your quality of life.  How’s your quality of life been recently?  You can measure yours too.

How are our members treating their condition?

  • Members in the HIV community are using more than 793 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
  • The top lifestyle modifications reported by our patients includes avoiding alcohol, diet and exercise and stop smoking.
  • The most widely used antiviral drugs (or cocktails) reported by members are AtriplaTruvada and Norvir; the top 3 supplements are Multivitamins, Omega 3 Fish Oil and Vitamin C.

What are their major symptoms?

What are they talking about?

  • Some of the top topics “tagged” in our forum discussions to date include blood counts, support groups, relationships, newly diagnosed patients and side effects.

Share and Compare: How are you feeling? Find out with InstantMe!

Posted December 1st, 2010 by

Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context.  Today, we’re introducing a new tool in all of our communities called “InstantMe.”  screen-shot-2010-12-01-at-91856-am1Want to chart how you’re feeling day in and day out?  Now you can.

All you need to do for InstantMe is answer this simple question – How are you feeling now?  You can answer this question as many times in a day or week as you’d like. InstantMe will appear on your profile to add more context to the other experiences you share there, as well as on your Doctor Visit Sheets so you can communicate more effectively about how treatment changes have impacted the whole you.  You can even sign up for a reminder and answer InstantMe right over email.

Why InstantMe?  Many of you already use the measurement tools we have in place to put your experiences in context  – for example, there’s the mood map, quality of life scale, or clinical rating scales (e.g., ALS functional rating scale). These instruments (which you typically fill out weekly or monthly) measure the severity and impact of medical conditions on your life.  But what about all the fluctuations that all of us experience day-to-day or even throughout one day? Maybe they’re due to our health, our treatments, or perhaps something totally unrelated, like holiday planning or work.

For a couple of years, mood community members have been using a tool called “InstantMood.”  They answer one simple question (“How would you rate your mood right now?”) and then choose an answer (“Very good,” “Good,” “Neutral,” “Bad,” or “Very bad.”)  Members can even add a short note (140 characters) to each rating to remind them what was happening at that time. It’s a popular functionality and helps members put context around changes in their overall condition.  Here are some trends members can watch with InstantMood:

Instant mood trends by day of the week Instant mood trends by time of day

What we’ve seen and heard from the Mood community is that this ability to “instantly” rate how they’re feeling is useful at both the individual and community level.  As a user, you give a little something and get instant feedback.  We like that concept.  In fact, you’ll be hearing a lot more about it in the blogs to follow this week, so stay tuned.

With this in mind, we’re excited to roll out InstantMe for all of our communities (thanks in part to what we learned from Mood).  Because we know there are more things that can influence how you feel than mood alone and we believe it’s important to have measurements that get at your whole well-being, we have changed the question slightly.

It’s a simple question, but probably one of the most important ones to ask you.  So tell us – How are you feeling now?

PatientsLikeMe member pwicks


Epilepsy Awareness Month: What do you know about Epilepsy?

Posted November 11th, 2010 by

epilepsyLaunched 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?

What are their major symptoms?

  • 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.


Know Thy Self – Measuring Your Quality of Life

Posted June 17th, 2010 by

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:

screen-shot-2010-06-16-at-105445-am

As Mike says in his podcast, this is just the beginning.  Stay tuned for more about quality of life measurements.


Manage your epilepsy like a PRO

Posted February 11th, 2010 by

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!

PatientsLikeMe member pwicks


Real-World Patients, Real-World Epilepsy:
An Interview with Blueyedgoddez

Posted January 27th, 2010 by

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:

plm_130x96 (PatientsLikeMe) First, welcome to the PatientsLikeMe epilepsy community!  Cool username, btw. How did you choose it?
75835 (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.
plm_130x96 (PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?
75835 (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.

plm_130x96 (PatientsLikeMe) How does epilepsy impact your every day quality of life?
75835 (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.
plm_130x96 (PatientsLikeMe) What inspired you to join the PatientsLikeMe epilepsy community?
75835 (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.
plm_130x96 (PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!

PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.

Posted January 26th, 2010 by

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.

picture-2“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.

PatientsLikeMe member lscanlon


A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

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 img_8741-300x225our 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.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

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.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

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 berlin-lithium-poster-207x3001AGM 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:

  • The National SummitInnovation: 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.

Happy New Year!
– The PatientsLikeMe Team