14 posts from July, 2011

PatientsLikeMeOnCall: Tapping into a Treasure Trove of Information

Posted July 29th, 2011 by

Dr. Kevin Dykstra, PhD, President and CEO of qPharmetra

Last Friday we kicked off our new weekly podcast series called “It’s Friday – Let’s Journal Club.” Thanks to everyone who tuned in. This week’s guest interview is with Dr. Kevin Dykstra, PhD, who is President and CEO of qPharmetra, a pharmacometric consulting company. Dr. Dykstra stopped by PatientsLikeMe headquarters to talk to our team about the use of modeling and simulation to aid drug development.

After this insightful “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Dykstra to learn more about how his team is working to measure the clinical utility of treatments in a systematic, quantitative way. Listen in to hear what exactly that involves and why Dr. Dykstra feels PatientsLikeMe is a “treasure trove of information” that is “incredibly useful” for both patients and drug developers

What Do You Know About Hepatitis?

Posted July 28th, 2011 by

World Hepatitis Day Is July 28, 2011

Today, July 28th, marks the first official World Hepatitis Day sponsored by the World Health Organization (WHO) and the World Hepatitis Alliance (WHA). Hepatitis kills more than one million people each year, while millions more suffer acute sickness or long-term ill health. The goal of this new event is to raise awareness of this global health issue while increasing prevention and control efforts.

Specifically, World Hepatitis Day focuses on hepatitis B and hepatitis C, which are both viral infections. Approximately 1 in 12 people worldwide is living with chronic hepatitis B or C, which represents a far greater prevalence than better-known conditions such as HIV or cancer. Yet hepatitis remains poorly known and understood, and the majority of those infected are unaware. Hopefully that can begin to change. With that goal in mind, here are a few quick facts to help raise your knowledge.

Did you know that…

  • …there is a vaccine available for hepatitis B that is effective in approximately 95% of cases?
  • …both hepatitis B and C can be transmitted through sharing household items such as razors and toothbrushes?
  • …these viral infections are considered “silent” because many people experience no symptoms for years?
  • …if a hepatitis B infection doesn’t resolve on its own and becomes chronic, it can cause liver cirrhosis or liver cancer? And a liver transplant may be needed?
  • …hepatitis B can be spread through unprotected sexual contact, while hepatitis C is contracted through blood-to-blood contact only?

If you didn’t know a few of these facts, learn more about viral hepatitis and how it can be prevented and diagnosed today. You can also learn firsthand from our hepatitis patients here at PatientsLikeMe. As of today, 156 members report hepatitis C while 41 patients report hepatitis B. In both conditions, Prograf, an immunosuppressant drug used to prevent organ rejection following an liver transplant, represents one of the most commonly reported prescription medications while men represent a higher percentage of our membership: 62% for hepatitis C and 63% for hepatitis B. There are also more than 600 discussions of hepatitis across 29 different forum rooms at PatientsLikeMe.

Are you living with chronic hepatitis B or C? Break the silence and share your story in any language on the WHA’s global “Wall of Stories.”

Photo of the Week: PatientsLikeMe Company Outing

Posted July 27th, 2011 by

Who are the people behind PatientsLikeMe? You’re looking at them! Every summer, we gather our team for a fun and relaxing company outing. This photo is from our recent summer 2011 event. As you can see, it was a great time for all of us to come together and enjoy each other’s company outside of the office. To see more photos from our outing, visit our Facebook page.

PatientsLikeMe 2011 Summer Company Outing

PatientsLikeMeOnCall: From Open Data to Actionable Data

Posted July 22nd, 2011 by

Pillbox's Rapid Identification System for Unknown Pills

Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker. Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative. And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal Club,” you’ll get to hear from him too.

After Journal Club last week, PatientsLikeMe’s Aaron Fleishman sat down with Hale to learn more about Pillbox’s goal of creating a one-stop resource for identifying unknown pills as well as how the project aligns with the Open Government Initiative enacted by President Obama. Tune in below to hear how Hale and his team took drug labeling data from “open to actionable” by listening closely to affected communities.

A Little More About Us: A Look Back at the Founding of PatientsLikeMe

Posted July 21st, 2011 by

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient. But it started like everyone else. You get that phone call, and your life changes.”Jamie Heywood, Co-Founder

Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.

Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.

You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.

We’re a 2011 Dosie Award Winner!

Posted July 19th, 2011 by

2011 Judges' Choice Gold Dosie Award, which PatientsLikeMe received for "Best Patient Community (Non-Brand Controlled)"

Sponsored by the health blog Dose of Digital, the Dosie Awards were created to recognize the best examples of social media in the healthcare industry. Now in its second year, this award program was expanded in 2011 to include both Judges’ Choice and People’s Choice Awards. Within each category, a Gold, Silver and Bronze medal is bestowed.

PatientsLikeMe is proud to be the recipient of the 2011 Judges’ Choice Gold Award for Best Patient Community (Non-Brand Controlled). A distinguished group of industry leaders judged this category, and we are extremely honored that they deemed us “the best of the best.” As a result of this award, we can now display our “Judge’s Choice Gold Dosie Award” badge on the PatientsLikeMe website.

Check out the full list of 2011 Dosie Award winners here.

Let Patients Help: The Undying Mission of E-Patient Dave

Posted July 18th, 2011 by

“Patients know what patients want to know.”
Dave deBronkart

Bloggerauthor and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us.

You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis. He read that the median survival for his condition was just 24 weeks from diagnosis. Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.

Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support. For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data. He argues that only with complete data can a patient crack the code on his or her own health situation. As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.

To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below.  (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” another core value of our company.  Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)

Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment.  “The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,'” he says.   “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment.  And when my side effects hit the first was uncontrollable chills and shaking I knew what is was.  I knew what to expect, and I knew how other patients like me had gotten through it.”

Photo of the Day: A Glimpse of PatientsLikeMeInMotion

Posted July 15th, 2011 by

As we mentioned in our blog post last week, our PatientsLikeMeInMotion program is off to a running start this year with more than 30 sponsored teams thus far. What does one of these run/walk/bike teams look like? Below is Team Sylvan, a 40-person team led by ALS patient Panda155.

Team Sylvan, Sponsored by PatientsLikeMeInMotion

Decked out in bright blue PatientsLikeMe t-shirts, Team Sylvan took to the streets for the ALSTDI Cure Is Coming Walk, held on May 7, 2011, in Lexington, Massachusetts. This is the third year that they’ve been sponsored by PatientsLikeMeInMotion, which makes them one of our veteran superstar teams.

Congrats to Team Sylvan and all of our sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more inspiring PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.

Remembering Jimmy V

Posted July 14th, 2011 by

the-v-foundation-for-cancer-research-the-v-foundation-for-cancer-researchIf you’re a longtime college basketball fan, you definitely know Jim Valvano (“Jimmy V”), the beloved former NC State basketball coach and award-winning broadcaster. Valvano’s battle with bone cancer galvanized the sports world, leading to the creation of the The V Foundation for Cancer Research by ESPN and Valvano in 1993. 18 years later, the foundation has raised more than $100 million for cancer research.

July 3rd through 13th marked “V Week,” when The V Foundation raises research funds each year in honor of Valvano with the ESPY Celebrity Golf Classic and an auction of signed sports memorabilia and one-of-a-kind sports experiences. If you listen to ESPN Radio, you may have heard them auctioning off these great sports items over the last 10 days.  The auction has now ended, but you can still make a donation at any time.

Finally, if you haven’t already seen it – or it’s been a while – this is also the perfect time to watch Valvano’s famously moving ESPY Awards speech, in which he announced his foundation and gave it his trademark mantra – “Don’t give up, don’t ever give up” – just eight weeks before his death. It’s a speech that will make you laugh, cry and think, all three things that Valvano argues make for a full day and a full life.

Media Roundup: PatientsLikeMe in the News

Posted July 12th, 2011 by

PatientsLikeMe was recently highlighted in three national media outlets: CBS News, BNET and The Washington Post. See below for an excerpt of what each said about us.

CBS News, "Health 2.0?  7 apps and sites that may save your life."

CBS News
Health 2.0? 7 apps and sites that may save your life.
“With information on more than 500 conditions, the crowdsourced research site [PatientsLikeMe] provides treatment and symptom reports, as well as a forum to help patients find social support. More than 100,000 people have created profiles on the site to connect with other patients.”

Want a strong digital strategy? Stop focusing on technology.
Digital Marketing Strategy #10: Gain customer insight. Drug maker UCB helped launch an online community for epileptics within PatientsLikeMe, in order to gather data about comparative effectiveness of different therapies, understand quality of life for patients, and measure drug safety and side effects.”

The Washington Post
The do-it-yourself healthcare revolution gets a boost.
“With PatientsLikeMe.com, patients now have an online social network for interacting with others who have similar symptoms, all of whom are seeking the same cure. The goal is to be able to crowdsource a cure by pooling together the data about their symptoms and sharing information about the side effects from treatments in an informal community.”

For all media coverage of PatientsLikeMe, visit our Press page. Or set up your own Google RSS feed for PatientsLikeMe.

Daring and Dreaming

Posted July 11th, 2011 by

Dare2DreamChallenge, sponsored by Superfutures

When you’re diagnosed with an illness, there are many unknowns ahead. For example, what’s the best future possible for you? At PatientsLikeMe, we believe that no one should have to face these questions alone.

Like today’s patients, today’s youth are also facing uncertainties. With the world economy remaining in a precarious state, it can be hard to imagine a bright future or a rewarding career. That’s why we’re taking a slight detour in today’s blog post to tell you about a contest that’s near and dear to us – the Dare2Dream Challenge. Sponsored by Superfutures, a website that helps teenagers prepare for college and life, the Dare2Dream Challenge is a video contest that asks youth between the ages of 14 and 21 to share their dream career in two to five minutes.

You may be thinking that this sounds a bit like our recent PatientsLikeMe “Express Yourself” Video Contest. And you would be right. We saw how the medium of video allowed our members to tell their powerful stories in their own way, and we’re excited to see how creative today’s youth will get in expressing their hopes and dreams. Know a young person who could use an opportunity to dream this summer? Direct him or her to facebook.com/superfutures or superfutures.com to learn how to enter the contest.

Win a lunch and mentoring session with Iqbal Theba, who plays Principal Figgins on "Glee"

Ten contest finalists will receive a “Cheggucation pack” from the textbook rental company Chegg that includes an iPad 2, a homework help subscription and more. But here’s the real carrot dangling for any young fan of the television show “Glee.” The grand prize winner will receive a free trip to Los Angeles to have lunch and a mentoring session with Iqbal Theba, who plays Principal Figgins on the hit show.

“When I was a teen, I ended up in college pursuing someone else’s idea for my future” says Theba. “I realized after an internship at a construction company that this was not for me. I started to think about what else I can do with my life. I had no idea I would become an actor. Now, I’m living my dream, and with this challenge, I can help others do the same.”

BBK and PatientsLikeMe: Combining Strengths to Help Patients Everywhere

Posted July 7th, 2011 by

Recently, PatientsLikeMe Chief Marketing Officer David S. Williams III had the opportunity to participate in a podcast interview with the industry magazine PharmaVOICE. Along with Bonnie Brescia, a Founding Principal of BBK Worldwide, he fielded questions about how the new alliance between our two companies can both enhance and expedite the clinical trial recruitment process. Listen in to hear what each had to say about what this partnership means and what we hope to achieve together.

PharmaVOICE Podcast Featuring PatientsLikeMe's David S. Williams III and BBK's Bonnie Brescia

Taking It to the Streets: The Spring PatientsLikeMeInMotion Report

Posted July 6th, 2011 by

PatientsLikeMeInMotion - Team Sponsorship Program for Disease-Related Run/Walk/Bike Events

Every year, PatientsLikeMe sponsors run/walk/bike teams around the country through PatientsLikeMeInMotion.

Led by a three-star member – someone with a complete health profile at PatientsLikeMe – each team receives bright blue PatientsLikeMe t-shirts, business cards and a donation towards their fundraising goal. Some of the events our members participate in include the Parkinson’s Unity Walk, the National Walk for Epilepsy (Epilepsy Foundation), the Walk to Defeat ALS (ALS Association) and Walk MS (National MS Society).

What’s happening this year?  2011 is off to a great start with 30 sponsored teams as of the end of June.  When you compare that to two years ago – when we sponsored around 40 teams for all of 2009 – you can see how the PatientsLikeMeInMotion program has grown.  Wondering whether any of these spring teams were raising awareness for your condition(s)?  Here’s the list of conditions represented for 2011 thus far:

We’re thrilled to support our members in this way, and we especially love seeing the positive connections that are forged when our members meet “offline” at these uplifting events.  That’s why we’ve asked PatientsLikeMeInMotion team members to submit their favorite photos from recent events.  Check out our Spring 2011 PatientsLikeMeInMotion Flickr Slideshow to see the enthusiasm firsthand:

We’ve also gotten some wonderful messages from team leaders this year that illustrate the impact of the program:

  • “Thanks so much for everything, I can’t wait to give the team their shirts and wear them with pride.  You all are awesome.”
  • “Thank you for sponsoring me in Walk MS! I am so grateful for your support, which brings me one step closer to achieving my fundraising goal. More importantly, it brings us one step closer toward a world free of multiple sclerosis.”
  • “Our team enjoyed the t-shirts and stood out in the crowd in the bright turquoise. We also enjoyed answering questions from those who asked about the t-shirts and the website, about which we gladly shared information!”

Organizing a run/walk/bike team for late summer or fall? Sign your team up for PatientsLikeMeInMotion sponsorship today. (Please allow 3-4 weeks lead time.)

PatientsLikeMe member mcotter

A Peek at Our June Newsletter for Members

Posted July 1st, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to over the last few rather eventful months, and if you are member who’s not opted in to the newsletter, sign up today.


How do you find a clinical trial that’s right for you?

There are currently more than 30,000 actively recruiting clinical trials in the US. How do you stay on top of which ones you might be A) interested in, B) eligible for and C) within driving distance of?

PatientsLikeMe's Advanced Search Options for Clinical Trials

It sounds like a tall order, but thanks to our new clinical trial search feature, it’s not. Now, you can search real-time listings on our Clinical Trials page (which pulls directly from ClinicalTrials.gov) and bookmark any trials of interest. Beyond parameters such as disease, age, gender and zip code, our search filters allow you to customize your search by keyword, trial phase, type of intervention and the distance to the nearest trial site.

Clinical Trials Link on Every Patient Profile

Too busy to do regular searches? No problem. We have added a new link on your profile that shows the number of actively recruiting trials you may be eligible for based on your profile data. That way, you’ll get a heads up any time you log on to your profile. Simply click through to see what they are, who else at PatientsLikeMe may be eligible, where the study locations are (in helpful map form) and how to enroll.

Sounds easy, doesn’t it? We thought that’s how it should be, which is why we’ve been working hard to make this feature to available to you. Turns out others think it’s a pretty great idea too. We were recently honored with the “Best in Show” award at the 2nd Annual Health Data Initiative Forum for this innovative service.


We are constantly working to improve our site. In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for June:

New Alert Tools for Saved Patient Searches

Ever wonder if any new patients like you have joined the site? Now you can be alerted by email when there are new results to a saved patient search. Simply click the alert button (the bell icon) next to your saved search to receive notifications.

For instance, want to know when a new patient taking a particular treatment joins? Easy. Create a saved search for that treatment and click the alert button.

PatientsLikeMe "Checkup" Reminder Emails

The best way to see how your treatments, symptoms and conditions are affecting your overall health is to keep your profile up-to-date. Sign up today to receive reminder emails that make it quick and easy to keep your profile current. If you already receive these notifications, you’ll see we’ve updated them a bit.