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

CAMBRIDGE, Mass. — Jan 22, 2013 — 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).

What happens when a patient finds another patient like them – for example, someone the same age with the same disease taking the same treatments?  Problems get solved, says PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Tune in below to hear more of Jamie’s thoughts in his interview with Boston.com, the online home of the Boston Globe, as part of an ongoing series called “The Innovators.” From the front door of our offices in Cambridge’s Kendall Square to the engineering team’s color-coded whiteboard, take Jamie’s insider tour of PatientsLikeMe headquarters and learn more about our mission of transforming healthcare.

The Innovators: Patients Like Me, Meet James Heywood, Innovator, Chairman and Co-Founder from REEL Entrepreneurs, Inc on Vimeo.

For other recent media highlights, visit our Press page.

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

Read Part I of Jeri’s guest post first!

Because blogging a clinical trial from start to finish was unheard of, I attracted the interest of not only patients, but those in charge of clinical trials. They are interested in the impact of social media on clinical trials, and how they can utilize it to their benefit. Sites such as personal blogs, Facebook, Twitter, and PatientsLikeMe are here to stay and people naturally want to share information.

I got a direct message on Twitter from Craig Lipset, who is Head of Clinical Innovation, Worldwide Research & Development for Pfizer. Social media brought us together to have a conversation about research that never could have taken place before the Internet. Everyone is more connected and approachable now. Naturally, I blogged about it.

But that was just beginning.  Tomorrow, September 14th, at 9:45 a.m. , I will be speaking along with Craig at the Disruptive Innovations conference, where the leaders in pharmaceutical research will be gathering to share ideas and come up with innovative ways of conducting clinical trials that take the “ePatient” into consideration. The 30-minute segment is entitled “Patient Leaders as Key Stakeholders in Clinical Trials,” and I will be there to represent – and put a human face to – clinical trial patients everywhere.

Knowing this is a chance of a lifetime for a trial patient to have the researchers as their audience, I wanted to reach out to those who have participated in past or current trials. My question to them is: “If you could ask or tell researchers just one thing about your own experience as a trial patient, what would that be?”

I plan to attend this conference and speak on behalf of all patients and put a face to the humans behind the data. I want to show them that we are connected now more than ever by social media. Researchers need to harness that power to their benefit. Soon they may use it to recruit and retain trial participants. I would like to see them provide a monitored gathering place for these trial patients to reduce the spread of misinformation as patients share data.

To people who are considering a trial I recommend using tools like PatientsLikeMe and ClinicalTrials.gov to stay informed about ongoing research and find a doctor willing to support your interest in participating. Remember that not every trial will culminate in a drug that wins FDA approval. By joining a clinical trial you will be taking risks, but you may also be reaping benefits long before the general public will have access to the drug. Never forget that you are a pioneer and by entering a trial you are giving the greatest gift possible. Without volunteers we would have no medical advancements.

I hope that researchers never forget the impact they are having on the lives of people everywhere. They aren’t just going to work every day; they are the makers of miracles. Often patients are joining these trials as a last resort. The work of researchers gives us all promise for a brighter future.

I hope that patients everywhere will take one clear message away from this: NEVER GIVE UP! It would have been so easy that day to end it all. I was depressed and certain my life could get nothing but worse. But, by choosing to fight, I have changed my life forever and doors continue to open for me. By reaching out through social media I know I am not alone. You never know what tomorrow may bring, so don’t give up on today!

Editor’s Note:  Jeri isn’t the only PatientsLikeMe member blogging about her experience in a clinical trial.  See our interview with PGen study participant PF Anderson for another patient’s chronicle!

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity.

I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down.

Deciding against suicide, I made some proactive choices that led to my meeting with the lead investigator of the Fingolimod (now marketed as Gilenya) clinical trials in Jacksonville, Florida. At my first appointment we discussed the Fingolimod trial called TRANSFORMS. I took the informed consent document home and went over all the risks and benefits with my family. After extensive baseline testing, I officially started the trial on August 20, 2007, a.k.a. “Randomization Day”, when I received my first dose of medication. I would return for regular testing many times over the next several years.

Joining the trial changed my life. I was very fortunate that I did not suffer any major side effects, and I am happy to say that my last MS attack to date was the very one which led me to contemplate suicide that day in April 2007.

I was fascinated by the research during the trial. They did a lot of testing, and I have never felt more assured that my overall health was being tracked, observed and cared for as I did in the clinical trial. Since I did not have medical insurance, this was a plus on top of benefits I might be getting if on the real drug.

When the trial began, I wanted to know what to expect. I tried searching the Internet for a clinical trial from a patient’s perspective and could find nothing. I decided to share my experience with the world so others considering a trial might have their own fears put at ease. Thus my blog, www.gilenyaandme.com, was born.

I blogged all of my checkups and along the way something unexpected happened. Many people wrote to thank me for being the reason they felt able to overcome their own fears and join a clinical trial. We began connecting and sharing our personal experiences in a way only the Internet could enable.

Read Part II of Jeri’s guest post!

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically.

The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here.

“Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.”

PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple sclerosis (MS) were able to submit adverse events related to a medication, medical product or medical device directly to the U.S. Food and Drug Administration’s MedWatch program through PatientsLikeMe.  Our system automatically pulled relevant data from the patient’s profile into a FDA 3500 form, dramatically reducing completion time.

Since then, we’ve also developed an integrated and comprehensive drug safety reporting platform that monitors patient data for potential adverse events when we are collaborating with a sponsoring partner in designated disease areas. These data are then clinically triaged and curated using the Medical Dictionary for Regulatory Activities (MedDRA), an industry standard terminology. Adverse events are submitted to our partners electronically in FDA 3500A format to meet regulatory timelines and reporting criteria.  Of note, PatientsLikeMe is the only online health data platform in social media that has successfully passed multiple drug safety audits conducted by our partners’ pharmacovigilance and drug safety experts.

What’s the difference between patient safety and drug safety?  And what do we see ahead in this critical area of healthcare?  Tune in to a podcast with PatientsLikeMe Chairman and Co-Founder Jamie Heywood on this very topic.

Today’s guest post is written by Kirt Hine, who was a research intern at PatientsLikeMe in June and July.  On his last day, Kirt gave a presentation to the entire company about his experience at the 2012 Healthcare Experience Design Conference, held in Boston last March.  It made such an impression that we asked him to share his takeaways on the blog.

The Healthcare Experience Design Conference, known in short as “HxD,” is somewhat of an anomaly.  It deviates from traditional healthcare conferences in that you have seasoned healthcare professionals sitting alongside academics, graphic designers, product experts, marketing agents, and entrepreneurs.  You know that feeling you get when you find something that you didn’t even know was missing?  That’s the way I felt attending HxD 2012.  It’s a true melting pot of professionals, and it hits an innovative sweet spot in the ever changing world of healthcare.

Preventative health, open data, electronic medical records and mobile health were just a few of the themes buzzing around HxD 2012.  But for me, the overall theme of the conference was the inherent trend of consumer-centered health.  We are witnessing a paradigm shift in healthcare – one in which patients are becoming customers.  With technological innovations and proper user interfaces, these customers are taking their health into their own hands.

Out of over two dozen speakers, there were a handful that stood out. Joseph Flaherty, senior manager of Agamatrix, gave an intriguing presentation about improving healthcare outcomes. Joseph is a seasoned hardware developer, and his presence was a great example of HxD’s professional diversity. Todd Park, CTO of the US Department of Health and Human Services (HSS), gave a keynote address titled Unleashing the Power of Open Data and Innovation to Improve Health. It was honestly groundbreaking. This tweet by conference speaker John Yesko sums it up pretty well:  “@todd_park is killing it at the HxD conference.  Future of government?”

Speaking of John Yesko, he is the user experience director at Walgreens. His talk, based on his experience and achievements in the retail pharmacy setting, was a wise take on the fundamental principles of consumer self service in healthcare.  On the mobile health front, speaker Josh Clark debunked mobile design myths. “There’s no such thing as mobile web,” he said while talking about how to make health apps more universal for users. Devorah Klein, a Boston-based designer, echoed these thoughts and said that this is especially true when designing for behavior change – an increasingly common goal in healthcare.

Athena Health President, CEO and Co-Founder Jonathan Bush, seen on the right in the image above, gave an entertaining reality check during his closing keynote interview.  I remember thinking to myself that the primary problem in healthcare is determining what our healthcare problems truly are.  With modern technology though, society is getting closer to solving those problems.  Fittingly, HxD’s mission statement reads: “We have the power to positively affect human lives through improved design technology in the healthcare arena.  We’re bringing together the best and brightest to explore the toughest challenges and present new solutions.”  And from my point of view, the conference succeeded at that.

It is impossible to properly acknowledge all of the noteworthy speakers and topics in this post.  But thanks to modern technology and sponsors, much of the conference is available for free on the web. HxD’s site offers a fun, interactive and illustrated “walk through” of the 2012 conference that includes slide decks, videos and abstracts of the speakers I mentioned above.  Additionally, HxD’s video page lists all of the speakers alongside videos of their talks.

If any of this sparks your interest, I encourage you to attend HxD next year.  The dates are March 24-26, 2013. Mark your calendars, and maybe we’ll see you there.

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S.

CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes.

“A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.”

According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States.

“Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to establish and apply innovative solutions that improve disease management and enhance the patient experience.”

Under the agreement, PatientsLikeMe will work directly with Merck’s clinical researchers and epidemiologists to analyze and interpret psoriasis patient-reported data.

PatientsLikeMe has an active community of psoriasis patients, where nearly 2,000 people share data and stories to reveal what it’s like to have the disease and what they do to treat it. Health profiles, forum postings and journal entries highlight their experiences, and a new survey reveals how the summer season affects them physically and emotionally. Go to http://plmjoin.com/psoriasis to learn more.

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.]

If you’re living in an Internet-enabled household, chances are you have all or most of your banking information at your fingertips.  Can you say the same for your health information?  For many, these important records are locked away in filing cabinets or kept at your doctor’s offices.

Despite the fact that patients have a legal right to see and get copies of their medical records, the statistics on access are fairly surprising.

• 41 percent of the public have never asked their doctor for copies of their records

• 81 percent say they’ve never asked to receive their records electronically

That’s why the Department of Health and Human Service’s Office of the National Coordinator for Health Information Technology (ONC) is sponsoring the “What’s in Your Health Record?” Video Contest.  The goal is to encourage more patients to ask for copies of their health information and look at new ways to view and track it online.  Simply share your story on video (2 minutes or less) – including what you learned from taking a closer look at your records – and you could win one of several cash prizes ranging from $250 to $3,000!  All submissions are due by August 20, 2012.

Maybe you’ll find a critical omission in your records, such as a medication allergy.  Maybe you’ll find something curious or unexpected that prompts you to ask questions at your next appointment or do research.  Or maybe you’ll simply confirm that you’re up to speed on your health status.  In any event, having your full health information on hand empowers you and also ensures that your loved ones have all the details they need to help you receive the best care possible.

Ask for your records today and see what you find!  And if you’re a PatientsLikeMe member, don’t forget that you can input and monitor hundreds of different lab results – from cholesterol to Vitamin D to PSA levels – on your profile.

Check out some of the media outlets that have highlighted health social networks recently – including PatientsLikeMe and our members.

Social Media a Godsend for Patients with Rare Diseases
PatientsLikeMe is highlighted as a good example in this Chicago Tribune article.

Medical Innovation Needs Silicon Valley Speed, Stat
Fast Company cites us for providing “unprecedented levels of feedback on side effects.”

How Social Networks Enable Patients to Be More Involved in Their Healthcare
PatientsLikeMe is “at the heart of this shift,” according to this Guardian (UK) article.

Telemedicine Tackles Mental Health Treatment
Our InstantMe survey of how you’re feeling is called out in this Information Week piece.

Match.coms of Clinical Trials Make It Easier to Connect Patients, Researchers
We’re spotlighted as one of the “matchmaking” services that could expedite research.

To see more PatientsLikeMe media coverage, visit our Press page.   To read other articles about Health 2.0 and join the discussion, follow this Twitter hashtag.

New Appointments Cap Active Year, Solidify Team for Strategic Growth

CAMBRIDGE, Mass. — Jun 27, 2012 — PatientsLikeMe, the leading health data-sharing website, announces the appointment of three new executives to its leadership team.  The company, which recently expanded its website to invite patients with any disease, makes this move to focus on expanding the collection and use of real-world disease knowledge to improve patients’ personal experiences and health outcomes.

PatientsLikeMe President and Co-founder Ben Heywood comments,  “Our new teammates—Michael, Sebastiaan and Jeremy—have the operational and leadership experience we need to help guide our strategic growth. I’m excited about the foundation we have built, and about the positive impact we’ll have on patient care, now and for many years to come.”

The following executives round out the PatientsLikeMe leadership team, led by Heywood and his brother, Co-founder and Chairman Jamie Heywood:

• Michael Evers, Executive Vice President of Marketing
  A consumer and technology marketing expert, Evers joins the company to spearhead business to business marketing and member acquisition. Before joining PatientsLikeMe, Evers was Global Vice President of Marketing for Artfact, the world’s leading live auction software and services provider, and earlier President of BroadMap, a provider of industry-leading geographic data products. Evers’ geospatial industry experience started at TomTom in 2005, where he was the Global Vice President of Marketing and Business Development for the company’s Tele Atlas business unit. Evers has also held senior positions at Motorola and AOL Time Warner.
• Sebastiaan Foppema, Executive Vice President of Business Operations
  As lead of the newly-formed Business Operations team at PatientsLikeMe, Foppema manages the business development, client services, research and health data integrity team. Most recently, he served as Senior Vice President of Provider Sales and Operations at NaviNet, a healthcare communication network that connects 70% of U.S. physicians with the leading health plans in the country. Prior to NaviNet, Foppema worked for a number of consulting companies in Europe and the U.S. He also formed a healthcare consulting practice in the Boston area, focused on payers and providers.
• Jeremy Gilbert, Head of Product
  A seasoned business development and innovation professional with expertise navigating the healthcare value chain, Gilbert leads product strategy and development efforts at PatientsLikeMe. Immediately prior to joining the company, Gilbert was an Engagement Manager at McKinsey & Company’s healthcare practice, where he led strategy and execution projects for Fortune 500 clients. He is also a co-founder of four technology startups, and has invented and launched notable products in e-commerce, mobile and discovery bioinformatics. A true technologist, Gilbert has developed software since the age of seven and spent more than 14,000 career hours in software design and construction.

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]

“If you want to understand health, you have to understand what it means to be sick, at phenomic and molecular levels, so you can correct it in a holistic and effective way.”
– Jamie Heywood

In February, PatientsLikeMe Co-Founder and Chairman Jamie Heywood was invited to participate in a “Innovation Series” panel sponsored by the MIT Enterprise Forum of Cambridge.  Entitled The Future of the Personal Genome, the event focused on what lies ahead now that genome sequencing is becoming more affordable for the average person.  (It cost around a million dollars in 2007; today, it costs close to $1,000.)

What is Jamie’s perspective on personal genetics, including the issues and opportunities involved?  Check out the first seven minutes of the video below for an overview.  From there, the panel – which included Dr. Michael Pellini, Dr. George Church and Colin Hill, and was moderated by Dr. Kevin Davies – digs into the intricacies of this important topic, including how to use genetic data to develop more personalized medicine.

Last June, we shared how our award-winning Clinical Trials tool was a product of “Wow Week,” which takes place every sixth week here at PatientsLikeMe.  It’s essentially our version of Google’s “20-percent time,” or a period of unstructured time where our engineers have the freedom to work on their own ideas.  We believe it fosters passion, experimentation and risk-taking.  In fact, we know it has given how many other site improvements were conceived during “Wow Week” in 2011.

The list is quite long (kudos, engineering team!), so we singled out three “Wow Week” projects that seemed to really resonate with our 128,000+ members.

MyCycle

Engineering Team Credits: Amy Newell, Doug Martila, Ben Zack and Scott Listfield

For women, your menstrual cycle can be intricately tied to your health condition(s), as well as how you feel. Now, with MyCycle, you can monitor your cycle length, view it next to your other health information and predict the next start date.  (If you’re a female who has not indicated your gender on your basic information, you’ll need to do so in order to receive access to this feature.)

Fuzzy Dates

Engineering Team Credits: Jeffrey Chupp (no longer with the company) and Michael Berkowitz

Are you often fuzzy about your dates?  So are most people.  In recognition of the fact that photographic memory is a rare trait, you can now specify dates with varying levels of accuracy or “fuzziness” – the year (2008), the year and month (May 2008) or the full date (May 22, 2008).  Whatever you can remember is better than no data at all!

Mobile InstantMe

Engineering Team Credits: Steve Hammond, Thomas Mayfield, Joe Rodriguez, Keenan Brock, James Kebinger and Doug Martila

For InstantMe (our daily log of how you’re feeling) to be more instant, we needed an app, right?  This mobile website/application uses HTML5 to support the tracking of your InstantMe scores on your iPhone, iPad or Android smartphone.  Learn more about what it can do here.  (Note that this feature is now open to all members, regardless of their star level.)

Are we right?  Did these new tools and features add more “Wow” to your PatientsLikeMe experience?  We’ve love to hear your thoughts in the comments section.  And as always, stay tuned to our Release Notes page for the latest technology updates and innovations.

FOR IMMEDIATE RELEASE

Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event

NEW YORK, NY – November 7, 2011 - Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.

“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”

For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org.  For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.

ABOUT R.A.R.E PROJECT

The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.

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 www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]