More than five years after founder Jack Dorsey sent the very first “Tweet,” Twitter has exploded into a social media behemoth.  Today, billions of real-time Tweets are sent each year about all manner of subjects – including healthcare.  But how in the world do you keep up with all of them?

That’s exactly the conundrum that the Healthcare Hashtag Project set out to tackle.  By creating a database of relevant hashtags to follow, they aim to “lower the learning curve of Twitter” and make it “more accessible for providers and the healthcare community as a whole.”  Ultimately, they hope this will help those interested in healthcare “find the conversations that are of interest and importance.”

To dip your toes into this geyser of information, check out the project’s up-to-date lists of healthcare hashtags (a topic categorization that begins with “#”), Tweet chats (where a group of people Tweet back and forth at a designated time), conferences and diseases.  Not only can you discover where the interesting conversations are taking place, but you can find out who to follow within your disease area and see what’s happening at related healthcare and scientific conferences.

Oh, and don’t forget that PatientsLikeMe is on Twitter too.  Follow us today!

Last week, PatientsLikeMe Co-Founder Jamie Heywood had the honor of speaking at the Personalized Medicine World Conference (PMWC), a two-day event held at the Computer History Museum in Silicon Valley.  His presentation was entitled “Patient Driven Convergence of Clinical Discovery and Care.”  In recognition of the conference’s venue as well as the role that technology plays in personalized medicine, we decided to share some of the “tweets” that Jamie’s talk generated on Twitter.

Ruby Gadelrab (@DivaBiotech) tweeted:  “James Heywood, PatientsLikeMe, starts presentation with very poignant picture of his brother suffering from ALS.”

Ron Ribitzky, MD (@RonRibitzkyMD) tweeted:  “James Heywood of PatientsLikeMe at PMWC: Industry develops systems that can impact if people live or die, but not giving it to them.”

Shirley Wu (@shwu) tweeted: “Heywood of PatientsLikeMe:  At events like this, I often see tech searching 4 problems, not well-defined problems searching 4 solutions.”

Ribozyme (@ribozyme) tweeted:  “JH PatientsLikeMe:  If they (were to) add genotype data it would be a huge phenotype-genotype correlation study.”

Daniel Kraft, MD (@daniel_kraft) tweeted:  “Talk from @PatientsLikeMe.  Reduced ER visits by 18%. ‘Predict the future so we can change it.’”

Are you part of the Twitterverse too?  Follow us @PatientsLikeMe today.  We’re just 25 people shy of reaching 5,000 followers!

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”

Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.

That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care.

Social media has also helped to accelerate medical research. A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments. There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.

So if social media can help both patients and researchers, it’s worth celebrating, no? Share your thoughts on how social media has impacted your life in the comments section below. (And, yes, that would count as another social media activity!)

The submissions are in and it’s now time for you to decide the winners of the first-ever PatientsLikeMe Video Contest! We asked “How has PatientsLikeMe changed your life?” and our members have worked long and hard to prepare their answers in these memorable videos.  Take a look and vote for your favorite!

PATIENTSLIKEME VIDEO CONTEST – VOTE HERE

There are 5 winners chosen for this contest and your votes decide 3 of them!  The creators of the top 3 voted videos will win American Express gift cards ranging from $150 – $500 (see contest rules for more details).  The deadline for voting is June 3, 2011. Anyone and everyone can vote, so be sure share to tell your friends and family.  Use “Share This” button on the video contest page to post on Facebook, Twitter (#PLMExpressYourself), etc.

Happy voting everyone!

Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research.  And that’s just what we’re working on.

Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in the field.  The goal is to turn up the answers that patients like you are seeking.  For example, can lithium slow the progression of ALS?  Or does limb dominance (aka “handedness”) correlate with ALS symptom onset?  Check out the findings from our patient-led Lithium and ALS Study as well as our work with the University of Oxford on handedness.

We also like to think of the dynamic, up-to-the-minute reports on our site, such as our treatment reports and symptom reports, as another form of “research.”   Every day, patients just like you contribute to these reports by sharing your real-world data, including what symptoms you’re experiencing, how you’re treating your condition and how well your treatments are working for you.

Now, the data you share is helping even more people.  Through an exciting new partnership with ALS Untangled (ALSU), we are helping to take the data you share straight to the scientific literature – and at record speed.  ALSU is an international consortium of clinicians and researchers seeking to investigate alternative and off-label therapies for ALS using the Internet, namely Twitter, Ning and PatientsLikeMe.  Through these modern methods, they aim to provide “timely, accurate and scientifically valid analysis of alternative and off-label therapies.”

As they wrote in their mission statement, there are three phases to their cutting-edge approach:

1. In the learning phase, they use their Twitter feed (@ALSUntangled) to collect ideas for potential therapies to investigate from patients just like you.  (Got something you want investigated?  Suggest it today!)
2. Then, in the discussion phase, they import these targeted therapies into a closed Ning group and gather information on them from the consortium, including PatientsLikeMe.
3. Finally, in the public release phase, they publish their findings as open-access articles in the prestigious journal Amyotrophic Lateral Sclerosis.  That means patients like you, caregivers, clinicians and researchers all over the world can read these reports in entirety for free.

Our first collaboration with ALSU focused on the use of Low Dose Naltrexone (LDN) for ALS.  The consortium analyzed data from the 31 members of PatientsLikeMe taking LDN to determine if there was evidence of benefit.  What did they find?  Efficacy data shared by these 31 ALS patients suggested that most did not notice any benefit, and side effects included headaches, nausea and diarrhea.  On this basis, along with a review of the literature, ALSU concluded that it does not recommend LDN for ALS patients at this time.  Read the full LDN study here.

Going forward, we hope that you will continue to share your evaluations of alternative and off-label treatments for ALS so that they can inform the world’s top researchers.  We’re thrilled that your data is being taken seriously by the wider medical community, and we encourage you to participate fully in this novel research project.

With every new member at PatientsLikeMe, there is more data generated for research, more dialogue about individual experiences, and a more expansive support network.  Additionally, with more patients we can become the world’s largest and loudest representative of the patient voice.  To that end, our job in marketing is to share your stories and tell the world about our community to bring in more patients.

Here are highlights of some of the work we did this year to promote your voice and attract the 32,000+ new members we welcomed to the community in 2010.  (Enjoy the video recap below as well.)

Social Outreach

• With a full year under its belt, 2010 was a big year for the PatientsLikeMeInMotion^TM program. With slick new t-shirts and a new sign-up form, the program just about doubled in size from 38 teams in 2009 to 60 teams in 2010.  More than 1,000 people were rocking PatientsLikeMe t-shirts for their disease awareness walks this year and the company donated $14,800+ in our members’ names to almost 50 nonprofit organizations.  (More about our nonprofit partnerships and work we’ve done with them is coming from Molly Cotter next week).  Finally, we launched our PatientsLikeMeinMotion^TM Flickr page, which features hundreds of photos of all of you walking for team PatientsLikeMe.

• In January 2010, PatientsLikeMe launched its first ever podcast called PatientsLikeMeOnCall^TM (hosted by our newest marketing team member, Aaron Fleishman). Through a series of podcasts this year, PatientsLikeMe provided insight from our thought leaders on topics most important to you, spotlighted work with partners and gave patients a place for their real voices to be heard. With more than 1,000 subscribers to date, PatientsLikeMeOnCall^TM is ready to bring more content to all of our listeners in 2011. Thanks for stopping by and listening!

• Along with PatientsLikeMeOnCall^TM, PatientsLikeMe continued to spotlight what you’re saying, learning and sharing through our blog (yes, we do manage the content for this lovely page!), Twitter, Facebook, YouTube and more. Our Twitter followers continue to grow with more than 2,100 followers. Our Facebook page now has more than 1,000 fans and our YouTube videos have a combined number of 74,258 views total, with 35,469 views this year alone.

Media Coverage:

Throughout the year, PatientsLikeMe was featured in a number of media stories (see our press page) that highlighted how you are making a difference for other patients and the healthcare industry as a whole.  In fact, many of you were able to share your stories with the world – from your disease experiences to your participation on PatientsLikeMe.  Thank you to everyone who contributed!  Some highlights include: Fast Company (“2010 Most Innovative Companies”), Fortune/CNN (“Tweet your chart”), Wall Street Journal (“Scrapers’ Dig Deep for Data on Web”), Fox News videos, Women’s Health (“Feel Sick Click Here”), NPR (“What Happens When People Migrate To The Internet”), New York Times (“When Patients Meet Online”), TIME magazine (“Group Therapy”) as well as articles in Bio-IT World, InformationWeek, Nature Biotechnology, PharmaTimes, and SmartMoney.

Events, Direct Mail and Newsletters
In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy and transplants) to inform physicians about how patients are benefiting from being members of PatientsLikeMe (see above).

Finally, we’re thrilled to hear how much you enjoyed the monthly community newsletters in 2010.  Altogether, we published 90 newsletters this year and featured many of your fellow community members in patient interviews (which also appeared here on the blog). Based on your feedback, we also finally launched an archive section on our site so you can catch up on all the latest and greatest from PatientsLikeMe.

Spreading the word is what we do in marketing, and we can say it is has truly been a pleasure telling the world about all that you do and all that you share through PatientsLikeMe.  2011 will only be better.  Thank you and Happy New Year!

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 our 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 AGM 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:

• Partnerships: Earlier 2009, PatientsLikeMe announced partnerships with biopharma leader UCB to launch an epilepsy community next year and personal genomics company 23andMe to help people with Parkinson’s.

• Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.”  PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June.  Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.

• Innovation: 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

A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in the Health 2.0 space because companies must balance patient needs with commercial reality to keep the doors open.

Central to that discussion for PatientsLikeMe are our core values. As I’ve discussed many times before, it is our imperative to keep patients first in all of our endeavors, including building the revenue base for the company, because we must honor the trust patients give us in sharing their deep health information.

There was a mini-flurry of Twitter activity during the talk as well. Check out some of the thoughts from leaders in the space to the right.

What do you think? Video from Bil:Pil will be available in the coming weeks. Kudos to Jonathan Sheffi and team for organizing a great unconference!