14 posts tagged “UCB”

Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


New Efforts Underway to Improve Care for Veterans

Posted January 22nd, 2013 by

With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes.

Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with epilepsy.  The ECoE has recently completed a pilot study focused on collecting and sharing real world, patient-reported data on seizure frequency and severity, treatment adherence, patient and physician dialogue and overall quality of life. The study is now open and available to all veterans living with epilepsy at www.poemstudy.org.

“This collaborative effort, with partners from government and private industry, provides an exciting opportunity to improve the outcomes of the thousands of veterans with epilepsy. Our work together may also deliver insights into how we can improve the care for anyone with epilepsy,” says study lead and ECoE’s John Hixson , M.D.

As part of their initial partnership to help epilepsy patients, which began in 2010, PatientsLikeMe and UCB conducted a study of members of the PatientsLikeMe epilepsy community that showed that people with epilepsy who joined PatientsLikeMe better understood their own seizures and improved adherence to their medications.1,2 The new study of veterans will integrate validated clinical outcome measures alongside the patient-reported benefits of the online PatientsLikeMe community. The community platform allows patients to update their physician on aspects of their epilepsy, such as changes in symptoms and medication side effects, and enables physicians to view this patient data prior to clinic visits. The goal is to provide a complementary support system that enhances clinic visits and improves patient outcomes.

UCB, a leader in epilepsy, is providing the funding for the study. “We are committed to improving the standard of care for people living with epilepsy. We believe that this collaboration will address some of the unique challenges faced by veterans impacted by epilepsy and will be a model for other providers of care,” says Patty Fritz , Vice President, Corporate Affairs and Operations at UCB.

According to the ECoE, approximately 5.6 million veterans visit VA Medical Centers each year, and approximately 66,000 of these veterans are diagnosed with seizures or epilepsy. Epilepsy is a chronic neurological disorder defined as two or more unprovoked seizures.3

Adds Jamie Heywood , co-founder and chairman of PatientsLikeMe, “This is a great opportunity to validate our earlier findings, which revealed that epilepsy patients using our website reduced side effects, increased compliance and reduced ER visits. Our partnership further demonstrates how committed UCB and the VA are to advancing innovation in health care. Collaborations like this will build the foundation for a patient-centric future in medicine.”

References
1. Wicks, P., Keininger, D. L., Massagli, M. P., de la Loge, C., Brownstein, C., Isojarvi, J., & Heywood, J. (2011). Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy & Behavior.
2. De la Loge, C., Massagli, M., Wicks, P. PatientsLikeMe®, a data-sharing online community: benefits for patients with epilepsy. Presented at the 63rd Annual Meeting of the American Academy of Neurology (April 9-16 2011), Honolulu, USA.
3. Epilepsy Foundation. About Epilepsy. http://www.epilepsyfoundation.org/aboutepilepsy/. Accessed 9/13/12

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

About ECoE
The VA has funded the Epilepsy Centers of Excellence (http://www.epilepsy.va.gov/). The Centers of Excellence are charged with: (1) establishing a national system of care to all veterans with epilepsy, (2) educating veterans and others in their lives impacted by epilepsy about high quality epilepsy care, (3) providing health professional education and training in order to deliver the highest quality of standard of care to veterans with epilepsy, (4) utilizing national VA and other databases in order to inform providers and policy makers in Central Office about health care delivery and health policy decisions, (5) conducting state-of-the-art research about epilepsy, and (6) implementing an informatics backbone to meet the above objectives.

About UCB
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 8,500 people in about 40 countries, the company generated revenue of EUR 3.2 billion in 2011. UCB is listed on Euronext Brussels (symbol: UCB).



Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published

Posted December 22nd, 2011 by

Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting.   In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.  (Check out our press release for more on this survey, which we conducted with our partner UCB.  PatientsLikeMe and UCB launched the epilepsy community in 2010.)

A Sample Section from the Epilepsy Survey

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

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

PatientsLikeMe member pwicks


News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence

Posted April 12th, 2011 by

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®, thepilespyprofilee 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.


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

Posted January 4th, 2011 by

rd1The 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.

PatientsLikeMe member pwicks


PatientsLikeMe at the American Epilepsy Society Meeting 2010

Posted December 20th, 2010 by

AES 2010 boothEarlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were:

  • “Is this free for patients to use?”   Answer: yes!
  • “How do patients record their seizures?”  Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week
  • “Can I send you some patients?”  Answer: definitely!
  • “What kind of research can you do with the site?”  Answer: stay tuned…

We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” Biases are important because they affect the quality of the research you can do and the conclusions you can draw from your findings. In our case, an early comparison of our data against a claims database suggests that our community members are more likely than the wider epilepsy population to be:  i) female, ii) in their 30s-40s (more people tend to experience their first seizure either in infancy or old age), and iii) on multiple medications to treat their seizures (“polytherapy”). We want to be transparent about understanding our biases and sharing them with the world, so you can click on the poster below to see the exact findings we presented.

aes2010-poster-thumbnail1

The conference was also a great opportunity to meet other leaders in the online epilepsy space, such as our friends at CURE Epilepsy.org, Epilepsy.com, Seizuretracker.com, and to meet with researchers from an exciting online project called the “Managing Epilepsy Well Network.” In many ways epilepsy is leading the way in online resources and we hope next year we might even convene a special meeting for us all to share ideas on the best ways to help this important patient community.

Our last opportunity to spread the word about epilepsy fell upon our Chairman and Co-Founder Jamie Heywood.  He spoke to some of today’s leading epilepsy doctors in the world about how we can help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”

PatientsLikeMe member pwicks PatientsLikeMe member AMGraham


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

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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


Video: Introducing the New Epilepsy Community

Posted January 29th, 2010 by

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.)


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


Sharing, Openness…and Privacy?

Posted November 18th, 2009 by

Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can’t have a business without you and our communities can’t exist to help patients without a business.

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This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives.  One of our company’s core values is transparency, which means we never want to surprise you.  Our site wouldn’t be what it is today if we didn’t honor the trust you put in us.  Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.

So, what has changed about our Privacy Policy?  Well, the short answer is not much – but if you haven’t read it in a while, it will read differently (and hopefully much clearer).  As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you.  In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means.  We give specific examples of real world cases of where and when your data is used and/or sold.

For example, over the last year we have expanded our efforts into understanding drug safety in the real world.  This started with the Treatment Evaluations – letting you tell us (and our customers) what is good and what is bad about the treatments you are taking.  Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe.  Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community.  All of these initiatives are building to a better understanding of how treatments work in the real world – one of our goals here at PatientsLikeMe.

As we’ve said through our site from the start – you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.”  This is common sense on any website, but for new members we wanted to make it clearer.   The bottom line – the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.

If you haven’t see our Read This! section, please do.  It’ll help give you a sense of what we believe the risks and benefits are to sharing information.  Openness is at the core of who we are as a company (see our Openness Philosophy).  Your openness is improving patients’ lives, accelerating research and helping improve medical care.   Thank you for that.  If you have any questions or comments, you know where to find us!

PatientsLikeMe member bheywood


An Interview with UCB’s Peter Verdru

Posted July 13th, 2009 by

Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy.  Below is an interview with UCB’s Vice President of Clinical Research, Peter Verdru, MD.  David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy community, adverse event reporting, and the partnership in general.

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581
(David) UCB is known as The Epilepsy Company.  What’s your goal in partnering with PatientsLikeMe to create a new community for people with epilepsy?
pvh-1-3
(Peter) As patient-centric companies, UCB and PatientsLikeMe are both committed to advancing research and improving the lives of people with life-changing conditions.  UCB has a long-term commitment to the epilepsy community – so a partnership with an organization like PatientsLikeMe seemed only natural.

Our goal with this partnership is to provide this community to patients with epilepsy to help them manage their disease. Additionally, the community will generate patient-reported outcomes that may help UCB better understand how patients live with epilepsy and help advance epilepsy care. We anticipate patient-reported outcomes data across treatment groups for seizure severity, number of seizures, symptoms, adverse events, health-related quality of life, and co-morbidities, among other things. Using this knowledge for our future clinical research programs would be a logical next step, leading to an even better understanding of what future treatments could offer or what type of patients would gain additional benefit.

581 (David) This partnership is said to give patients a voice in advancing research.  How so?
pvh-1-3 (Peter) This community will give patients the tools they need to measure their own outcomes. Participants will record their real-time, day-to-day progress in controlling their seizures and achieving their treatment goals, and share that with the community to help other patients, caregivers, researchers and industry learn more about the disease. Tracking their disease over the long-term may help patients and physicians work together to evaluate the impact of their treatment. Eventually, clinical research programs might also benefit from the long-term data these patients are sharing.
581 (David) Through the partnership, both companies will be working to design and deploy a system that allows for adverse event reporting to the FDA.  Why?
pvh-1-3 (Peter) UCB has an ethical and legal responsibility to report adverse events associated with our drugs. If adverse events for any UCB drugs are mentioned on the site, UCB is required to report these directly to the U.S. Food and Drug Administration (FDA). Therefore, we are working to develop and deploy a solution that will allow us to assess and process potential adverse events, report them to the FDA, and capture them in the UCB safety database.
581 (David) What’s the most exciting part of this initiative for UCB?
pvh-1-3 (Peter) We’re excited to be taking a leadership role in the pharmaceutical industry to create a community that will give patients a forum for showing their treatment outcomes. Patients are really the experts about how epilepsy impacts their lives.

UCB is focused on bringing new treatments to patients with severe diseases like epilepsy. We sincerely believe this unique partnership will bring real value to the large community of patients, families and caregivers

581 (David) Thanks Peter!

UCB and PatientsLikeMe Partner to Give People With Epilepsy a Voice in Advancing Research

Posted June 15th, 2009 by

Today is an exciting day for PatientsLikeMe.   In a first-of-its-kind industry-patient partnership, PatientsLikeMe is joining forces with biopharma company, UCB, to launch a new community for people with epilepsy to capture real-world experiences of the disease and help advance research.

The news release announcing the partnership is below.

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – June 15, 2009) – Biopharma company UCB and PatientsLikeMe, the leading online community for people with life-changing conditions, today announced a strategic partnership to create an online, open epilepsy community that captures real-world experiences of people living with epilepsy in the U.S.

Scheduled to launch in early 2010, this platform will be designed to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen.

More…

PatientsLikeMe member dwilliams